| mhserver.nl | Corticobasale Degeneration.nl | The website contains personal stories from Joke van der Wal about her own experiences with the diagnosis and its impact on her communication and life. The site describes Joke's disease progression, starting with a slight speech decline in 2022 and the diagnosis of CBD in December of that year. Furthermore, the website provides information about the disease itself, what it is, and emphasizes that patients are not alone and that peer support is important. | Disease & Treatment → Rare Diseases 229 | peers 89 diagnosis 1490 story 8285 communication 10162 | |
| hefkensadvies.nl | Hefkens Advies | The Microsoft365 package is offered free of charge to patient organizations, but requires that the environment be configured to meet the organization's specific needs. The package includes features such as email, file sharing, and video conferencing, enabling effective collaboration between volunteers and employees. Hefkens Advies supports patient organizations with the setup and customization of the virtual office environment, and offers free assistance with simple questions via email or phone. | Cloud Computing → Microsoft 365 97 | virtual office 58 microsoft 365 430 email 1012 collaboration 16036 | |
| levenmetalzheimer.nl | Medworq BV | Alzheimer’s disease is an incurable brain disease in which cells in some parts of the brain accumulate and die, and the exact cause has not yet been identified. In the Netherlands, there are approximately 270,000 people with dementia, of whom an estimated 160,000 to 190,000 suffer from Alzheimer’s disease, with a significant number of younger people with dementia. The website provides information about the disease, diagnosis, treatment, prevention, and the experiences of patients and their relatives. | Neurology → Dementia 509 | alzheimer 34 cause 226 symptoms 558 dementia 674 patient 4082 | |
| mbct-ca.nl | MBCT-Ca | MBCT-Ca is tailored to address the emotional challenges experienced by cancer patients, often feeling more burdensome than the physical and practical consequences. The program has been developed and adapted over 10 years based on the specific needs of cancer patients on oncology departments. MBCT-Ca is a follow-up program, often after radio or chemotherapy treatment, and includes shorter exercises that can be valuable during treatment. The training is described in the book 'Mindfulness: A Kindly Approach to Being with Cancer' by Trish Bartley. | Diseases → Cancer 546 | cancer 631 exercises 1058 diagnosis 1490 mindfulness 1789 treatment 21203 | Limburg → Maastricht 6008 |
| paranagua.nl | PCH | PCH is an informal gathering place for people with P, their family, friends, caregivers, healthcare providers, and interested parties. Meetings take place monthly and include presentations by experts and the exchange of useful tips. A JP Café is also organized for younger people with P, focusing on the specific challenges they experience. | Neurology → Parkinson’s Disease 98 | presentation 1785 meeting 2381 tips 2789 | |
| mijnstadmijndorp.nl | MijnStadMijnDorp | The platform contains a large collection of resources, such as photos, stories, archival documents, and magazines, contributed by various participants. MijnStadMijnDorp also offers a digital magazine, 'Overijssel Toen en Nu,' which is published four times a year and is freely accessible via a newsletter. Visitors can create an account to comment, add stories, and participate in a forum, contributing actively to the collection and the discussion about the history of Overijssel. | Directories → Portals 369 | forum 1362 magazine 2182 history 7286 story 8285 | Netherlands → Overijssel 39649 |
| patientenfederatie.nl | Patiëntenfederatie Nederland | The organization strives for improvements in healthcare, such as shortening waiting times, increasing transparency in the quality of care, and reducing medication shortages. Patiëntenfederatie Nederland operates in various fields including complementary care, digital care, childbirth care, primary care, and palliative care, offering information and tools for patients and professionals. Recent news highlights the organization's involvement in policy-making, including agreements in the Supplementary Health and Welfare Accord and the preparation of an election manifesto. | Political Processes → Representation 24 Politics → Lobbying 83 | waiting 27 policy 2149 patient 4082 care 12338 | |
| nfk.nl | Dutch Federation of Cancer Patient Organizations | The website offers information and services for patients, volunteers, and professionals, covering topics ranging from appropriate care and prevention to scientific research and political action. The platform includes various sections such as patient participation, knowledge agendas, scientific research, guidelines, and a blog with current news articles and insights. The NFK is active in organizing webinars, publishing surveys, and supporting affiliated organizations and individuals involved in the fight against cancer. | | surveys 73 cancer 631 patient 4082 research 8967 care 12338 | |
| spierziekten.nl | Spierziekten Nederland | The site offers an A-Z index of muscle diseases and helps visitors find their diagnosis. Visitors can become members and participate in an online meeting place where members share their experiences. The website organizes events such as the Muscle Disease Day, which offers information, workshops, and meetings, with a special program for young people. | Anatomy & Systems → Neurology 1340 | member 10154 event 45199 | |
| ahckids.nl | AHC Vereniging | The organization focuses on promoting research into the cause of AHC and an effective treatment method, advocating for the interests of AHC patients, and providing information and education to patients, families, doctors, and caregivers. The website contains information about the AHC disease, its symptoms, causes, diagnosis, treatment, and future prospects. The AHC Vereniging organizes events such as the AHC Symposium and has an online community via Facebook. | Disease & Treatment → Neurological Disorders 100 | symposium 339 patient 4082 research 8967 | |
| als.nl | Stichting ALS Nederland | The website provides information about ALS, including symptoms, diagnosis, treatment, and research, as well as stories from patients and their caregivers. Furthermore, the foundation offers opportunities for donation, organizing events, and participation in activities, aimed at raising awareness and fundraising. The site also contains information about the organization itself, its mission, accountability, team members, and collaborations with other organizations and patient associations. | Neurological Disorders → ALS 12 | als 45 patient 4082 donation 5110 research 8967 collaboration 16036 event 45199 | North-Holland → Amsterdam 41253 |
| stofwisselingsziekten.nl | Patiëntenvereniging voor Stofwisselingsziekten | The association supports adults, children, and families with these rare conditions, where a minor cell process error can have significant consequences. VKS offers information, contacts with other families, and advocates for the interests of those affected. The website contains news, events, a magazine, and blogs, as well as links to relevant research and infographics. | Disease & Treatment → Rare Diseases 229 | magazine 2182 family 6462 event 45199 | |
| harteraad.nl | Harteraad | The website provides information on various heart and vascular conditions, such as heart failure, atrial fibrillation, and high blood pressure, as well as support and resources for patients. Harteraad promotes collaboration with professionals, patient involvement in research, and the role of volunteers and movement coaches. The organization focuses on improving information provision around heart medication and promoting a healthy lifestyle for people with heart and vascular conditions. | Disease & Treatment → Cardiovascular Diseases 91 | heart 534 medication 1164 patient 4082 research 8967 | |
| msvereniging.nl | Multiple Sclerosis Association Netherlands | The website offers information about Multiple Sclerosis (MS), including its types, symptoms, diagnosis, treatment, and available centers. The organization provides various services, such as a helpline, coaches, a magazine, regional meetings, and opportunities for membership and donation. In addition to providing information, the association advocates for the interests of people with MS, such as lobbying for better care and reimbursement of treatments. | Neurology → Multiple Sclerosis 64 | helpline 28 multiple sclerosis 39 advocacy 357 magazine 2182 membership 10442 | |
| lymevereniging.nl | Lymevereniging | The association provides support, information, and advocates for the interests of chronic Lyme disease patients, with the goal of promoting better care. Visitors can read experiences of Lyme patients, find information about the disease of Lyme, and support the organization by becoming a member, volunteer, or donor. The association offers a Tick Remover Map, which helps users safely remove ticks, and provides information about the disease to prevent infections. | | lyme disease 18 disease 285 story 8285 | |
| apneuvereniging.nl | ApneuVereniging | The association offers various services, including a forum, social media, information about treatments, and a members-only section with extra content. They collaborate with TNO and the Zaans Medisch Centrum on research into measurable factors of sleep apnea, incorporating patient experiences. Members gain access to the ApneuMagazine, the ApneuBulletin, personal advice through various helpdesks, and contact with other patients via a Facebook group and forum. | Sleep Disorders → Sleep Apnea 14 | sleep apnea 44 forum 1362 association 8562 research 8967 member 10154 | |
| md.nl | MD Nederland | Myotone Dystrophy (MD) is a serious, hereditary disease that worsens with each generation, leading to 'puzzle pieces' of unexplained complaints and early deceased family members appearing. The website provides information about the disease, personal stories of people living with MD, and opportunities to donate, volunteer, or start a campaign. MD Nederland organizes events and collaborates with other organizations, such as Spierziekten Nederland (Muscle Disease Netherlands), to improve the diagnosis, treatment, and quality of life for people with MD. | Essential → Health 91589 | campaign 3428 donation 5110 family 6462 | North-Holland → Amsterdam 41253 |
| freya.nl | Freya | The website covers various aspects of fertility, including the stage of wanting a child, the menstrual cycle, possible diagnoses, different fertility treatments (such as IVF and IUI), and related health issues like endometriosis and PCOS. The site provides information about seeking medical assistance, such as visiting a gynecologist, making diagnoses, and the potential risks and safety of various treatments. Freya also includes an online magazine, 'Expect,' and documentation on various abbreviations and clinics, and addresses questions about dealing with the environment, psychological support, and options like egg and embryo donation. | Pregnancy & Childbirth → Reproductive Health 35 | fertility 289 egg 335 diagnosis 1490 treatment 21203 | |
| parkinsonnet.nl | ParkinsonNet | The network comprises over 3,900 specialized healthcare professionals and offers information, guidelines, and support to both patients and providers. The website provides various options, such as finding a local healthcare provider, participating in training courses, and accessing information about the disease and treatment. ParkinsonNet actively shares scientific evidence and promotes optimal care with the goal of enhancing the lives of people with Parkinson's. | Neurology → Parkinson’s Disease 98 | parkinson 120 healthcare provider 474 participant 1934 network 11123 care 12338 | |
| trombosestichting.nl | Trombosestichting Nederland | The website informs about thrombosis, a blood clot that can have serious consequences and affect anyone. The foundation provides information on risk factors, prevention, and the consequences of thrombosis, including pulmonary embolism and heart attack. Visitors can donate through the website, sign a petition to raise awareness about thrombosis during long-distance travel, and request free brochures and the Antistollingspas. | Disease & Treatment → Cardiovascular Diseases 91 | thrombosis 14 pass 92 petition 223 brochure 1642 donation 5110 research 8967 | |
| crohn-colitis.nl | Crohn & Colitis NL | The website offers information about these conditions, including causes, symptoms, treatments, and available medications. Various tools and resources are also provided, such as patient stories, information on nutrition, exercise, and relationships, and a search engine for good practitioners. The association offers a range of services, including an experience expert line, a newsletter, online consultations, and the possibility of membership or donation. | Anatomy & Systems → Digestive Health 21 | disease 285 medication 1164 research 8967 membership 10442 treatment 21203 | |
| vmce.nl | Association for People with Constitutional Eczema | The website offers extensive information about constitutional eczema, including what it is, different treatments, and the results of a study on protective clothing. The association provides various services such as an online store with brochures and books, a Facebook group and page, and a blog. Furthermore, the association organizes webinars and activities focused on education, peer support, and raising awareness of eczema in politics and society. | Dermatology → Eczema 22 | eczema 61 peer support 68 online store 905 association 8562 treatment 21203 | |
| kinderkankernederland.nl | Association for Childhood Cancer Netherlands | The association focuses on individuals and families facing the impact of childhood cancer, both during treatment and afterwards. The website offers various resources such as newsletters, podcasts, blogs, an online shop, and information about support options like contact lines and family support groups. The association collaborates with various organizations, including the Princess Máxima Center for Pediatric Oncology, to raise awareness about the issues surrounding childhood cancer. | Special Needs & Support → Support 2006 | petition 223 family 6462 story 8285 | |
| hemoned.nl | Stichting HemoNED | The website provides information about the register, the 'VastePrik' digital logbook, and the associated app. Information is available on the goals, organization, collaboration, and privacy of HemoNED, as well as about ongoing research and publications. The website contains news, annual reports, contact information, and relevant information for participants and healthcare providers such as forms, manuals, and FAQs. | Essential → Health 91589 | register 362 patient 4082 data 5872 research 8967 | |
| schisisnederland.nl | Schisis Nederland | The website provides comprehensive information on schisis, Pierre Robin, and Stickler, covering topics such as causes, forms, treatment, and genetics. It includes sections dedicated to different age groups and life stages, offering guidance for pregnancy, childhood, and adulthood. Additionally, Schisis Nederland facilitates contact, collaboration, and volunteer opportunities, including national events, a newsletter, and an online forum. | Anatomy & Systems → Neurology 1340 | volunteer 8367 association 8562 | |
| vereniginghomeopathie.nl | Vereniging Homeopathie | The website describes homeopathy as a holistic healing method that restores the balance of body and mind. It offers information on various aspects of homeopathy, such as health complaints, types of homeopathy, experiences and homeopathy for children, animals and pregnancy. The website also contains information about the Vereniging Homeopathie, its membership benefits, a blog, webshop and contact details, as well as dossiers on various health problems and news about reimbursement for homeopathic treatments. | Alternative Medicine → Homeopathy 627 | practitioner 127 dossier 248 reimbursement 465 homeopathy 529 complaint 6479 membership 10442 | |
| dietistvg.nl | Diëtetiek Verstandelijk Gehandicaptenzorg (DVG) | The network, organized by the Dutch Association of Dietitians (NVD), facilitates knowledge exchange and collaboration among dietitians. DVG offers dietitians VG opportunities to develop and improve their expertise through E-learning and networking connections. The organization specifically focuses on personalized nutrition, considering the individual needs of clients and collaboration with doctors, family, and caregivers. | Nutrition → Nutritional Advice 646 | intellectual disability 72 dietitian 299 nutrition 4935 network 11123 collaboration 16036 | |
| diavaria.nl | Diavaria | Diavaria collaborates with several hospitals, including LUMC (Leiden), Alrijne (Leiderdorp), and Groene Hart Ziekenhuis (Gouda), and is affiliated with the national Nierpatiënten Vereniging Nederland (NVN). The association offers membership to kidney patients, partners, family members, and caregivers, and organizes webinars, symposia, and other events to support its members. Diavaria seeks volunteers to support its activities and offers a combined membership that provides access to NVN activities and information. | Disease & Treatment → Diseases 829 | hospital 560 volunteer 8367 association 8562 membership 10442 | South-Holland → Leiderdorp 329 |
| vsop.nl | VSOP | The association includes various aspects, such as members, board, employees, funding, and a comprehensive history. The website provides information about events such as the National Conference, the Rare Disease Day, and the Rare Angel Awards, as well as the ecza platform. The VSOP is involved in the development of a National Plan for rare diseases, and the website contains information about this plan, including recent developments and motions from the Dutch Parliament. | Disease & Treatment → Rare Diseases 229 | rare disease 12 award 642 conference 763 | |
| icconnect.nl | IC Connect | The website provides extensive information on various diseases that occur on the intensive care, such as neurological disorders, infectious diseases, and cardiovascular conditions. Attention is paid to the treatment of patients, with information on specific procedures such as ECMO, plasma exchange, and oxygen therapies. In addition to information and support, the website focuses on post-IC care, including the post-intensive care syndrome (PICS) and the support of families and bereaved relatives. | Health → Medical Care & Services 29461 | ic 20 pain 1919 patient 4082 family 6462 care 12338 treatment 21203 | |
| hartpatienten.nl | Heart Patients Netherlands | The website offers various sections targeted at different age groups of heart patients, including seniors, young adults, adults, and seniors, as well as information for families. Heart Patients Netherlands keeps track of the latest news regarding heart and vascular diseases, provides general information, and signals misconduct, with the patient's interests always at the forefront. The platform facilitates contact between patients and families via a forum, Facebook group, and offers guided vacation trips and other forms of support. | Anatomy & Systems → Heart 53 | forum 1362 magazine 2182 patient 4082 news 15293 | |
| pdsb.nl | PDSB | The website offers information about the symptoms, causes, diagnosis, treatment, and impact of IBS on daily life. Resources include an online test, brochures, FAQs, a decision aid, and rationale for treatment options to help patients understand their situation and determine their care. The PDSB also organizes events, meetings, and collects donations, collaborating with universities like Maastricht University to improve IBS care. | Gastrointestinal Disorders → Irritable Bowel Syndrome 26 | ibs 26 diet 747 test 769 research 8967 treatment 21203 | |
| parkinson-vereniging.nl | Parkinson Association | The website contains information about Parkinson’s disease, its causes, diagnosis, progression, symptoms, treatments, and potential alternatives. The association offers a platform for patients and their families to meet, share experiences, and learn about current research news and developments. The association organizes Parkinson Cafés, courses, training sessions, and other activities aimed at promoting independence and improving quality of life. | Neurology → Parkinson’s Disease 98 | parkinson 120 autonomy 155 cafe 1622 research 8967 member 10154 care 12338 | |
| epilepsie.nl | EpilepsieNL | The website offers extensive information about epilepsy, including brochures, downloads, and webinars. People with epilepsy are encouraged to share their experiences through stories and connect with each other. EpilepsieNL actively works to raise funds for groundbreaking research into new treatments and medications for epilepsy. | Neurology → Epilepsy 22 | epilepsy 26 donation 5110 volunteer 8367 research 8967 | |
| mijngezondheidsgids.nl | Mijn Gezondheidsgids | The platform offers information on a wide range of diseases, including cancer, cardiovascular diseases, neurological disorders, and infectious diseases. Mijn Gezondheidsgids publishes podcasts, videos, and dossiers on various health topics and specific conditions. The website includes information on prevention, treatment, diagnosis, and self-care, and covers themes such as rare diseases, chronic illnesses, and the latest developments in healthcare. | Essential → Health 91589 | dossier 248 disease 285 podcast 3328 video 6714 care 12338 | |
| bloedziekten.nl | Stichting Zeldzame Bloedziekten | The foundation provides information on various rare blood diseases such as HX, CDA, HES, TTP, AIHA, DBAS, HS, KT, PKD, HE, and HPP, and refers to relevant sources. The foundation organizes inspirational days and events, such as the ‘Samen op Weg’ inspirational day on April 1, 2023, with the aim of strengthening the patient association and building friendships. The website includes a general report of the inspirational day and an announcement for a youth event in Giethoorn on September 9, 2023, as well as information about the National Rare Blood Disease Day 2024. | Disease & Treatment → Rare Diseases 229 | rare disease 12 reference 332 patient 4082 association 8562 event 45199 | |
| nederland-davos.nl | astmaVereniging Nederland en Davos (VND) | The website provides reliable knowledge about asthma, including news, articles, webinars, and newsletters. The platform documents the impact of asthma by giving faces to people with the disease and publishes various thematic content, such as articles on obesity and the Wmo. The association offers membership, support, and the opportunity to share experiences and identify bottlenecks in care and society. | Disease & Treatment → Chronic Diseases 1168 | asthma 58 knowledge 3528 article 6000 association 8562 membership 10442 | |
| huntington.nl | Huntington Association | The website provides information about Huntington's disease, including information about genetics, practical tips, and experiences of patients and their families. There is also an online shop where members and donors can purchase merchandise and make donations, and a newsletter to stay up-to-date on current developments. The association is involved in scientific research, provides assistance and supports patients and their families through activities, education and subsidies. | Diseases → Neurological Diseases 21 | donation 5110 newsletter 6504 research 8967 membership 10442 care 12338 | |
| mevereniging.nl | ME Vereniging Nederland | The website provides information about ME, a vascular neuroimmune disease caused by an enterovirus, and describes the symptoms and impact on patients. The association focuses on patient advocacy, education, and promoting member contact. It also offers a digital donation box, with a portion of the donations going to the Hersenstichting (Brain Foundation). The website emphasizes that ME is not a part of ‘ME/CVS’ and that coronavirus viruses do not cause the disease, presenting scientific research to support this. | Disease & Treatment → Chronic Diseases 1168 | i 11 guideline 344 advocacy 357 patient 4082 donation 5110 research 8967 | |
| sepsis-en-daarna.nl | Sepsis and Afterwards | The website focuses specifically on sepsis, a serious infection, and the various consequences that can result from it, such as blood poisoning or the impact of the Corona virus. Sepsis and Afterwards offers reliable information, articles, news, tips, and a helpful book on the subject, as well as contact options and peer support through workshops. The initiator, Idelette Nutma, is a sepsis (experience) expert and former nurse, who also organizes peer support groups through workshops. Marianne is working on a documentary to raise awareness about sepsis in the Netherlands. | Disease & Treatment → Diseases 829 | peers 89 documentary 1081 | |
| tourette.nl | Stichting Gilles de la Tourette | The website contains extensive information about Tourette, including its causes, diagnosis, treatment, and impact on daily life. The foundation organizes activities for peer support in the Netherlands and offers various contact methods, such as telephone lines, online groups, and meetings. The site also provides information about scientific research, tools, and opportunities for donations and volunteering. | Anatomy & Systems → Neurology 1340 | diagnosis 1490 research 8967 treatment 21203 | |
| nvhp.nl | NVHP | The website provides information about various types of bleeding disorders, such as hemophilia, Von Willebrand, and platelet disorders. There is information about treatment methods and the daily challenges associated with living with such a condition. The website contains a member magazine ('Faktor') with news, association information, and experiences of members, as well as a calendar of events and activities. | Essential → Health 91589 | member 10154 event 45199 | |
| arch.nl | Autoimmune Research & Collaboration Hub | ARCH provides a medical expertise platform for both patients and healthcare providers, focused on improving the quality of care and reducing the disease burden. The platform facilitates knowledge sharing and makes expertise accessible, and supports multidisciplinary collaborations and expertise consultations. ARCH organizes national working groups for various systemic autoimmune diseases and stimulates research into these complex conditions. | | autoimmune disease 11 knowledge sharing 162 healthcare provider 474 patient 4082 collaboration 16036 | |
| hoofdpijnnet.nl | Hoofdpijnnet | The website covers different types of headaches, such as migraine, cluster headaches, and tension headaches, as well as headaches in children and their relation to other conditions. It also offers practical information on living and working with headaches, including lifestyle advice, support, and advice points. The website organizes meetings, provides peer support, and offers access to personal stories and brochures, with the campaign ‘Really Sick’ to take migraines seriously. | Neurology → Headache 109 | migraine 84 headache 182 webinar 870 walk 2161 member 10154 | |
| alspatientenvereniging.nl | ALS Patient Association | The association offers peer support, themed meetings, and a buddy program to support individuals with these diagnoses and their families. The website provides information on various aspects of the disease, including treatment options, care, research, and practical assistance such as home adaptations and aids. The association was initiated in 2014 by two patients and values patient participation ('from, for, and by patients'). | Neurological Disorders → ALS 12 | als 45 peer support 68 buddy 133 event 45199 | |
| fahrpatientenvereniging.nl | Fahr Patient Association Netherlands | The website provides information about Fahr’s disease, including estimated patient numbers in the Netherlands and the impact of genetic research. It highlights the importance of donors, their role, and opportunities to make a donation. The website features a community, an expertise center in Utrecht, a newsletter, frequently asked questions, videos, and contact options for patients and caregivers. | Disease & Treatment → Rare Diseases 229 | disease 285 patient 4082 donation 5110 newsletter 6504 community 7931 research 8967 | |
| patientervaringsverhalen.nl | Patient Experiences | The website houses a growing collection of books, podcasts, and other resources of personal stories. These stories are valuable for patients, caregivers, healthcare providers, policymakers, and researchers. The website offers options to search the collection, filter, and share one's own story or tip. | Research → Research Methods 55 | caregiver 1167 patient 4082 collection 7566 research 8967 care 12338 | |
| hidradenitis.nl | Hidradenitis Patiënten Vereniging (HPV) | The association strives for early diagnosis and good treatment of these conditions, and focuses on raising awareness and recognition of HS. The website offers information on various aspects of HS and SP, including symptoms, treatments, self-care, and experiences. In addition to information, the association also focuses on improving the quality of life for patients and their families, and offers support and a platform for collaboration. | Dermatology → Skin Conditions 61 | membership 10442 treatment 21203 | |
| hirschsprung.nl | Hirschsprung - Patient Association | The website offers detailed information about Hirschsprung's disease, including symptoms, diagnosis, treatment, and research. The association organizes various activities for all age groups and offers an online shop with products related to the disease. Furthermore, the website provides opportunities for peer support, volunteering, donations, and membership, and publishes news and scientific insights. | Medical Care & Services → Pediatric & Child Health 2121 | disease 285 patient 4082 association 8562 treatment 21203 | |
| angelmansyndroom.nl | Vereniging Angelman Syndroom Nederland | The vASN aims to provide information about the Angelman syndrome to parents, family members, doctors, caregivers, scientists, and other interested parties through meetings, events, and the promotion of research. The website contains information about the history, board, membership, contact details, events, reports and publications of the vASN. Currently, events are being planned, such as a Family Day in September 2025 at the Apenheul in Apeldoorn and an Information Day in October 2025. | Disease & Treatment → Neurological Disorders 100 | research 8967 membership 10442 event 45199 | Gelderland → Apeldoorn 6996 |
| bariatriegroepnederland.nl | Stichting Bariatrie Groep Nederland | The website gathers information on gastric reduction surgeries, recipes, stories from fellow patients, and offers online education and a magazine. There are also opportunities for peer support, events, and information targeted at healthcare providers, including training and a knowledge base. The website aims to help people make a choice about a gastric reduction surgery and provide support in maintaining a healthy lifestyle after the surgery. | Surgery → Bariatric Surgery 14 | magazine 2182 recipe 5142 | |
| stichtingslapeloosheid.nl | Stichting Slapeloosheid | The website covers topics such as the causes, effects, and treatment methods of chronic insomnia, including cognitive behavioral therapy and complementary care. It also offers practical information on what individuals can do themselves to improve their sleep and how to seek professional help. Stichting Slapeloosheid was recently officially established and is committed to expanding its online channels, developing new plans, and improving its website. | Hygiene & Environmental Factors → Sleep 419 | insomnia 31 donation 5110 volunteer 8367 research 8967 book 11396 care 12338 | |
| rett.nl | Dutch Rett Syndrome Association | Rett syndrome is a rare neurological developmental disorder primarily caused by a spontaneous mutation in the MECP2 gene. The association represents individuals with Rett syndrome in the Netherlands and offers various services, including an online shop, contact information, and information on research and treatment. The website also provides an overview of activities such as family days, networking events, webinars, and events, as well as experiences and news about Rett syndrome. | Disease & Treatment → Neurological Disorders 100 | association 8562 research 8967 | |
| pmddnederland.nl | Stichting PMDD Nederland | The foundation recognizes that PMDD is underrecognized and underdiagnosed and strives to change this situation. The platform provides various resources, including personal blogs, experience stories, videos, a forum, and tools to help patients understand and manage the disorder. Furthermore, Stichting PMDD Nederland offers information on treatment options, medical advice, research, and events such as the PMDD Netherlands Congress, and promotes self-help initiatives. | Pregnancy & Childbirth → Women’s Health 968 | forum 1362 foundation 6678 treatment 21203 | |
| mecvs.nl | MECVS Netherlands | The website covers various aspects of ME/CFS, including causes, consequences, diagnosis, treatment, and relationships. A wide range of information is available, including brochures, guides, FAQs, experience stories, and research opportunities. MECVS Netherlands offers support through peer support, a helpdesk, and donation opportunities, and promotes research and webinars to expand knowledge about ME/CFS. | Disease & Treatment → Chronic Diseases 1168 | trajectory 556 webinar 870 research 8967 | |
| me-cvsvereniging.nl | ME/cvs Association | The website offers comprehensive information about what ME/cvs is, its symptoms, and how it is diagnosed. Furthermore, the website provides information on various treatment methods and support for patients, families, and healthcare providers. The website also contains news, scientific research, and guidelines related to ME/cvs. | Disease & Treatment → Chronic Diseases 1168 | patient 4082 research 8967 membership 10442 | |
| ataxie.nl | Ataxie Vereniging Nederland | The website offers information about cerebellar ataxia, a neurological disorder caused by a dysfunction in the cerebellum. The association addresses both hereditary and non-hereditary forms of cerebellar ataxia, focusing on both medical and social support. The website also includes information about services such as peer support, newsletters, and resources for healthcare providers and researchers. | Disease & Treatment → Neurological Disorders 100 | healthcare professionals 235 association 8562 research 8967 | |
| triple-x-syndroom.nl | Contact Group Triple X Syndrome | Launched on March 18, 2024, this website serves as a replacement for the previous website and focuses on individuals affected by Triple X syndrome, including parents, those diagnosed, and professionals. Triple X syndrome, also known as Trisomy X or 47,XXX, is characterized by having three instead of two X chromosomes, leading to a variety of symptoms. The contact group, established in 2004 by Thea and Ida, offers support and contact opportunities, with Jessica serving as the webmaster. | Disease & Treatment → Chronic Diseases 1168 | syndrome 21 diagnosis 1490 professionals 1966 parent 4318 | |
| gastrostars.nl | Stichting Gastrostars | The foundation was established by Emma Kok after her participation in the talent show Ministars, aiming to raise more awareness about gastroparese. Gastroparese is a rare disease that often leads to misunderstanding and hinders the daily activities of patients. The website offers a platform for patients to share experiences, exchange advice, and provide support to each other. A patient's story illustrates the daily challenges associated with the illness. | Disease & Treatment → Rare Diseases 229 | patient organization 16 peers 89 care 12338 | |
| longkankernederland.nl | Longkanker Nederland | The website offers information about various aspects of lung cancer, including causes, symptoms, examinations, treatments, and follow-up care. Furthermore, Longkanker Nederland offers support at various levels, including practical assistance, peer support, and information in multiple languages. The organization has projects, a board, staff, and volunteers, and maintains collaborations with healthcare providers and partners in the Netherlands and internationally, while also publishing annual reports and plans. | Diseases → Cancer 546 | lung cancer 11 healthcare provider 474 patient 4082 research 8967 | |
| aangeborenhartafwijking.nl | Patient Association for Congenital Heart Defects | The website covers a wide range of topics related to congenital heart defects, including various specific conditions (such as Aortic Valve Stenosis, ASD, and Double Outlet Right Ventricle), complications, treatments (such as Ablation and Cardioversion), and aspects of daily life. In addition to informational content, the association offers support through peer support, peer support days, and a community platform (LIFE Community), and opportunities for peer matching. The website also provides information about advocacy, legal aspects, financial assistance (such as healthcare allowance), and the transition process from pediatric to adult care. | Anatomy & Systems → Heart 53 | peers 89 family 6462 research 8967 care 12338 treatment 21203 | |
| vasculitis.nl | Vasculitis Stichting | The website covers various forms of vasculitis, including ANCA vasculitis, large vessel vasculitis, and other rare vasculitides. Information is provided on diagnosis, medication, consequences, and the effects of the disease, as well as the effects of medications. The foundation maintains collaborations with various experts, research centers and hospitals, such as the UMC Amsterdam and the Maasstad Rotterdam. | Diseases → Autoimmune Diseases 31 | organ 633 medication 1164 patient 4082 research 8967 | |
| oscarnederland.nl | OSCAR Nederland | OSCAR Nederland is a multi-ethnic organization that advocates for the interests of carriers and patients with sickle cell disease and thalassemia. The organization collaborates with the National Hemoglobinopathy Treatment Working Group to offer patients better treatment and a brighter future, including screening through heel prick tests. OSCAR Nederland provides information, peer support, assistance, and scientific research related to sickle cell disease and thalassemia, and publishes annual reports and strategic plans. | Disease & Treatment → Rare Diseases 229 | donate 77 research 8967 | |
| amyloidose.nl | Amyloïdose Nederland | Amyloïdose is a rare disease characterized by the accumulation of misfolded proteins in organs and tissues, causing damage. The website provides information about different types of amyloïdose, such as AL-amyloïdose, ATTR amyloïdose, and AA amyloïdose, as well as potential treatments. The foundation is driven by volunteers and relies on donations and support to carry out its activities, offering patient stories and information about the disease. | Disease & Treatment → Rare Diseases 229 | patient 4082 foundation 6678 story 8285 treatment 21203 | |
| zichtopzeldzaam.nl | VSOP | The website contains an overview of the associated patient organizations and their contact information, as well as their presence on social media. Understandable descriptions of the diseases are provided, in collaboration with erfelijkheid.nl or the relevant patient organizations. The website provides an overview of recognized Dutch expertise centers for rare diseases and their pages on Orphanet, and contains quality documents related to the care for these diseases. | Disease & Treatment → Rare Diseases 229 | quality standards 12 patient organization 16 expertise center 29 disease 285 | |
| eetstoornissen.nl | WEET | The website provides information on various types of eating disorders, their recognition and consequences, as well as available help and treatment. WEET focuses not only on patients but also on their relatives and offers resources such as a helpline, themed meetings, experience stories and a newsletter. The website also addresses common misconceptions about eating disorders, including the frequently placed association with anorexia and emphasizes that eating disorders can affect anyone. | Mental & Emotional Well-Being → Eating Disorders 199 | relatives 27 eating disorder 55 help 864 patient 4082 care 12338 | |
| alopecia-vereniging.nl | Alopecia Vereniging | The association is a network of volunteers offering support for various forms of alopecia. The website provides information on alopecia, treatments, experiences, and relevant topics such as hair prosthetics and reimbursement. Furthermore, the association organizes activities, including congresses, workshops, swimming days, and walks, to connect and inform people with alopecia. | Disease & Treatment → Conditions 174 | alopecia 19 magazine 2182 association 8562 | South-Holland → Leiden 7089 |
| hellp.nl | Hellp Stichting | The website contains information about the symptoms of PE/HELLP, along with an explanatory video. It also describes the consequences of this condition for the mother and child, including recurrence chances and possibilities for recovery. The website provides access to a webshop, information about specialized hospitals, and peer support through the Hellpdag. | Health → Pregnancy & Childbirth 4222 | symptoms 558 webshop 8648 | Overijssel → Zwolle 7395 |
| vmdb.nl | VMDB | The association focuses on policy, advocacy, donations, and volunteer work. The website offers information about bipolar disorder, including symptoms, treatments, and supporting resources. The organization hosts national gatherings and has a toolkit to determine the most appropriate care together with healthcare providers. | Health → Mental & Emotional Well-Being 23704 | toolkit 157 association 8562 care 12338 | |
| heupafwijkingen.nl | Vereniging Afwijkende Heupontwikkeling | The website offers extensive information on various hip conditions, such as hip dysplasia, transient hip inflammation, and hip impingement, focusing on both children and adults. In addition to informational content, the VAH provides practical tips, experiences, and addresses for peer support, and organizes meetings and supports patients and families. The VAH is a patient association dedicated to advocating for its members' interests, providing practical services, such as the rental of assistive devices, and fostering member engagement. | Podology → Orthopedics 1525 | hip 23 meetings 1011 association 8562 | |
| narcolepsie.nl | Dutch Narcolepsy Association (NVN) | The NVN offers information on the symptoms, diagnosis, treatment, and history of narcolepsy and idiopathic hypersomnia. The website includes a peer support contact, a Facebook group, a magazine, news, an agenda, and publications. The NVN organizes events such as flash mobs and has a commemorative book, showcasing the history of the association. | Anatomy & Systems → Neurology 1340 | symptoms 558 association 8562 membership 10442 | |
| stichtingafasienederland.nl | Stichting Afasie Nederland | Aphasia is a language disorder that can affect speech, understanding, reading, and writing. The foundation supports scientific research and projects aimed at helping people with aphasia to participate actively in society. Visitors can donate, register, and find information about the foundation, its activities, and the impact of aphasia. | Conditions → Neurological Conditions 20 | aphasia 31 society 1376 donation 5110 foundation 6678 research 8967 | |
| ogbs.nl | Stichting OGBS | The website provides information about what GBS is - a bacterium often harmless but potentially life-threatening in the event of an infection. Experiences of fellow patients are shared and information about GBS infections is provided. The foundation offers practical support for patients and promotes research into GBS. | Disease & Treatment → Infectious Diseases 294 | infection 58 research 8967 | |
| alvleeskliervereniging.nl | Alvleeskliervereniging | The website provides information on various conditions affecting the pancreas, including acute and chronic pancreatitis, and pancreatic cancer. It shares experiences, offers a 24/7 telephone help and information line, and provides information on research and medical advice. The association is run by volunteers and works with a medical advisory board, promotion team and foundation. | Disease & Treatment → Gastrointestinal Disorders 48 | condition 425 help 864 volunteer 8367 | |
| dsdnederland.nl | DSD Nederland | The website offers an overview of information about DSD, personal stories from fellow members, and the association’s activities. DSD Nederland focuses on peer support, information dissemination, national meetings, and weekends, despite limited resources. The organization receives funding from the PGO fund and relies on membership fees and donations. | Anatomy & Systems → Specific Conditions 205 | fund 1063 story 8285 association 8562 membership 10442 | |
| debra.nl | DEBRA Nederland | The website provides information about EB, including its forms, potential complications, and treatments. The organization hosts various activities, such as peer support meetings, events and guidelines, and offers a handbook with practical tips for daily care. DEBRA Nederland is financed through various sources, including subsidies and donations, and has an ANBI status, indicating that it is a public benefit organization. | Disease & Treatment → Rare Diseases 229 | peer support 68 anbi 120 donation 5110 association 8562 care 12338 | The Hague → Scheveningen 1625 |
| reumabond.nl | Reumabond | The website offers information on various forms of rheumatism, such as osteoarthritis, psoriatic arthritis, and lupus, as well as tips on coping with arthritis and finding helpful tools. Reumabond also organizes a community where members can support each other and share stories and tips, with an active Instagram page offering recognition and positive vibes. The organization encourages donations and action to support research and improve the quality of life for people with arthritis. | | arthritis 51 solidarity 91 instagram 1216 knowledge 3528 story 8285 | |
| pijnpatientennaar1stem.nl | SWP | The website offers information about chronic pain, including its causes and different types. It provides details about patient organizations and relevant books on managing chronic pain. The site includes information about a congress, courses (such as ‘Strong with Pain’), and the Chronic Pain Care Standard.” | Pain → Chronic Pain 240 | patient organization 16 chronic pain 31 course 14728 | |
| lewy.nl | Lewy.nl | The website contains medical information about Lewy body dementia, including information on prevention, symptoms, treatment, and causes. Users can connect with other patients and caregivers, participate in a forum and attend meetings, and share their experiences. Furthermore, the website offers the opportunity to contribute to scientific research and view ongoing studies in the Netherlands. | Neurology → Dementia 509 | forum 1362 patient 4082 research 8967 | |
| net-kanker.nl | Stichting NET-groep | In November 2023, the Stichting NET-groep transferred all its content and medical information to Stichting NETNECkanker. The website will remain available for a period, after which references to the new website will be provided. After 15 years, the board of the Stichting NET-groep is ceasing its activities, retiring, and making way for a new organization. The Stichting has announced its dissolution from the KvK and ANBI and will publish its financial statement. Remaining funds will be transferred to activities for NEC cancer in the Antoni van Leeuwenhoek hospital in Amsterdam. | Diseases → Cancer 546 | net 107 financial statement 321 stichting 481 | North-Holland → Amsterdam 41253 |
| msnetwerk.nl | Nationaal MS Fonds | The platform has been online since Thursday, February 29, 2024, and provides reliable information. The website focuses on nurses affiliated with the National Association of MS Nurses. Vacancies are also offered, such as for members of the MS training committee, and activities and training sessions are described. | Neurology → Multiple Sclerosis 64 | ms 55 nurse 261 | |
| denijestichting.nl | The Nije Stichting | The foundation offers an in-house center, the Nije Hoeve, where workshops, relaxing activities, and conversation opportunities are provided to promote the physical and mental well-being of visitors. The Nije Stichting was founded as a result of the personal fight against cancer of initiator Debby Nijenhuis. The organization works with professionals, volunteers and experienced individuals and receives financial support through the doubling of donations from the National Fund Against Cancer. | Specialty Medicine → Cancer Care 97 | cancer 631 center 1115 wellbeing 2620 patient 4082 | |
| autismeoverijssel.nl | Autisme Overijssel | AKO provides connection, meeting, and expands knowledge about autism through equal collaboration. AKO’s knowledge meetings include scientific and practical knowledge, with a particular focus on the personal experiences of people with autism. AKO organizes meetings and webinars and offers useful addresses of organizations and institutions related to autism. | Mental & Emotional Well-Being → Autism 958 | autism 758 webinar 870 address 901 meetings 1011 newsletter 6504 member 10154 | Netherlands → Overijssel 39649 |
| msvnamsterdam.nl | MSVN Amsterdam | The website includes information about various activities such as themed afternoons, swimming, MS cafes, and digital get-togethers. A key part of the website is the report and slides from the Cognitietour 2.0, focused on discussing cognitive impairments in MS. The website offers practical tips, such as renting a wheelchair accessible vehicle through Welzorg Go, and information about MS and work. | Neurology → Multiple Sclerosis 64 | multiple sclerosis 39 | North-Holland → Amsterdam 41253 |
| ankevanhaften.nl | There Is No Such Thing as Good Cancer! | The website addresses the topic of thyroid cancer and life after it, with a focus on realistic stories and experiences of patients. Events such as the NFU symposium "Good Care You Provide Together!” and the Celsus Invitational Conference are organized. The site contains blogs, articles, and guest blog posts on various topics related to cancer and life after, including travel and personal stories. | Diseases → Cancer 546 | personal story 41 symposium 339 lecture 1624 blog 13392 | Gelderland → Nijmegen 9384 |
| pijnalliantieinnederland.nl | Pijn Alliantie in Nederland | The organization brings together all relevant parties in the Netherlands involved in the prevention, diagnosis, and treatment of pain. The website provides information on various aspects of chronic pain, including what pain is, different types of pain, the biopsychosocial model, and available treatments. PA!N strives to provide the highest quality information about care, education, and science to improve care for pain patients and is the result of a collaboration of scientific associations and patient organizations. | Chronic Diseases → Pain 450 | alliance 46 science 491 pain 1919 patient 4082 care 12338 education 13471 | |
| ncv.nl | Dutch Coeliac Association | The website provides information about developments and activities surrounding the gluten-free diet, including the presentation of a subsidy for gluten-free awareness in healthcare institutions. The NCV organizes various activities, such as craft workshops, workshops, and cycling events, to support research into coeliac disease and raise awareness. The website offers the opportunity to become a member, volunteer, and find information about dieticians and relevant services, such as an online shop and knowledge center. | Disease & Treatment → Conditions 174 | dietician 56 gluten-free 156 volunteer 8367 research 8967 membership 10442 | The Hague → Leidschenveen-Ypenburg 395 |
| ehlers-danlos.nl | Ehlers-Danlos Patients Association (VED) | The association was founded in 1984 to assist patients with questions they may not be able to discuss with their doctor. The website provides information on various types of EDS and HSD, diagnosis, treatments, experiences, and practical information. The association also organizes events, webinars, and other activities such as the Fonkeldagen and Regiodagen. | Disease & Treatment → Chronic Diseases 1168 | ed 11 diagnosis 1490 association 8562 treatment 21203 event 45199 | Rotterdam → Center 382 |
| stomavereniging.nl | Stoma Association | The website contains extensive information about different types of stomas, daily practices, practical tips, and frequently asked questions. Sections are dedicated to membership, donations, activities, events (such as Stoma Event and Stomadagen), and news updates. The website also offers support through peer support (Facebook groups), an online resilience program, and the Stoma App for children. | | stoma 20 research 8967 membership 10442 event 45199 | Eindhoven → Woensel-North 176 |
| nahforumalmere.nl | NAH Forum Almere | NAH Forum Almere was founded by and for individuals with NAH, primarily experienced individuals and caregivers, to create a platform for mutual support and information sharing. The organization offers a listening ear and helps people with NAH and their families navigate the complexities of available support organizations. NAH Forum Almere organizes events, such as an end-of-year party, to strengthen the community and provide a platform for contact and exchange. | Disease & Treatment → Neurological Disorders 100 | nah 77 caregiver 1167 event 45199 | |
| alszorgregelaars.nl | ALS Zorgregelaars | The website provides information on the practical aspects of an ALS diagnosis, including regulations, aids, and the impact on various areas of life such as work, housing, and independence. ALS Zorgregelaars offers specialized support and assistance, with the patient retaining control and being cared for by professional help. The organization focuses on helping patients live as long and comfortably as possible, and provides information on reimbursement through WMO and Wlz, as well as a community and the core values of the organization. | Neurological Disorders → ALS 12 | als 45 reimbursement 465 regulation 1350 community 7931 | |
| epilepsieliga.nl | Dutch League Against Epilepsy | The website addresses developments in epilepsy care, focusing on the input of the government and medical and societal changes. The League stimulates and informs about scientific research into epilepsy and functions as a bridge between science and practice. The League is an association of professionals in epilepsy care and collaborates with expertise centers, EpilepsieNL, and the Dutch Association of Neurology (NVN). | Neurology → Epilepsy 22 | epilepsy 26 league 99 science 491 professionals 1966 knowledge 3528 collaboration 16036 | |
| sepsisnet.nl | SepsisNederland | Sepsis is a serious and often overlooked cause of death worldwide, leading to inadequate recognition of its urgency. The website provides information and stories from patients and caregivers who have battled sepsis, including blogs, videos, and opportunities for peer support. SepsisNet organizes and promotes events such as the ‘SepsisNederland Meeting Day’ and World Sepsis Day to raise awareness and share knowledge about sepsis. | Disease & Treatment → Chronic Diseases 1168 | knowledge 3528 patient 4082 care 12338 event 45199 | |
| puntvoorparkinson.nl | Punt voor Parkinson | The organization collaborates with various healthcare professionals, including neurologists, geriatric specialists, nurses and paramedics, who are affiliated with the PPNN and ParkinsonNet, to provide optimal care. Punt voor Parkinson offers specialized care, short and long stays, and contributes to delaying nursing home admissions through clinical rehabilitation. The website contains information about patient folders, Parkinson pharmacies, Covid information and recent news stories about events and donations. | Neurology → Parkinson’s Disease 98 | parkinson 120 healthcare professionals 235 research 8967 care 12338 treatment 21203 | Overijssel → Twente 2578 |
| taskforcecancersurvivorshipcare.nl | Taskforce Cancer Survivorship Care | The website covers topics such as the National Action Plan Cancer & Life, which outlines the necessary vision, strategy, and steps to improve care for people living with or after cancer in terms of physical, mental, and social/societal needs. The website contains a knowledge agenda that addresses important knowledge gaps in the areas of late effects, psychosocial and physical effects, work and recovery, and the organization of care, as well as a plan of action for scientific research. The Taskforce Cancer Survivorship Care organizes events such as the Cancer & Life Congress, which is focused on discussing and developing solutions for the specific needs of cancer survivors. | Diseases → Cancer 546 | point of contact 27 action plan 138 congress 500 knowledge 3528 care 12338 | |
| leverpatientenvereniging.nl | Dutch Association of Liver Patients (NLV) | The website covers a wide range of liver conditions, including viral hepatitis, liver failure, liver tumors, liver fat accumulation, and various genetic disorders. In addition to information and support, the NLV offers services such as an informative package for migrants with hepatitis, a blog, news articles, and an agenda. The organization is committed to collective advocacy, research, and providing advice, and is searching for a new director as of September 1st. | Essential → Health 91589 | liver 37 advocacy 357 member 10154 care 12338 | |
| prostaatkankerstichting.nl | Prostaatkankerstichting | The website covers various aspects of prostate cancer, including symptoms, risk factors, treatments, consequences, and patient stories. Various resources are available, such as a prostate cancer guide, brochures, online programs, webinars and peer support contact opportunities. The website also offers news, articles and personal stories about prostate cancer, as well as information on events and gatherings. | Cancer → Prostate Cancer 17 | prostate cancer 33 personal story 41 symptoms 558 treatment 21203 | Gelderland → Berg en Dal 1294 |
| poly-artrose.nl | P-AL | The association aims to represent the interests of individuals with arthritis and polyarthritis. Recent leadership changes include the appointment of a new president and ongoing efforts to recruit board members. The P-AL organizes and promotes various initiatives, such as a five-year celebration and research into the effectiveness of shoe modifications for arthritis in the big toe. | Disease & Treatment → Chronic Diseases 1168 | arthritis 51 board 3438 research 8967 member 10154 education 13471 | |
| netneckanker.nl | Stichting NETNECkanker | The NETNECkanker foundation is a patient advocacy organization that promotes collaboration between patients, families, healthcare providers, and researchers. They provide educational materials and facilitate peer support networks for patients. The website contains information on various types of NET and NEC, treatments, research, and patient stories. | Diseases → Cancer 546 | net 107 foundation 6678 research 8967 treatment 21203 | |
| hartenlongtransplantatie.nl | Heart & Lung Transplant Patient Association | The website contains reports of activities such as darts tournaments, beach walks, and patient meetups, as well as information about past and future events. Patients can become members, donate, and share their experiences. There is also information about patient meetups, the TransplanERENday, and other events. The website offers opportunities to contact other members, the experienced desk officer, and a complaint procedure. There is also a space for choosing names for a mascot. | | transplantation 20 donation 5110 membership 10442 event 45199 | |
| asbestslachtoffer.nl | Asbestslachtoffers Vereniging Nederland | The website contains extensive information on asbestos diseases, their causes, symptoms, and treatments. It includes a news section with recent news articles, newsletters, videos, presentations, and annual reports. The AVN offers contact opportunities with fellow sufferers, professional assistance, and information about the organization itself, including its statutory data and ANBI status. | Disease & Treatment → Diseases 829 | video 6714 news 15293 | |
| maculavereniging.nl | Macula Association | The website includes information about the causes, diagnosis, treatment, and prognosis of macular degeneration. Tools such as a risk test and stories from fellow patients and blogs are available. The association offers support through webinars, podcasts, peer support groups, and national gatherings. | Medical Care & Services → Ophthalmology 92 | assistive devices 31 peer support 68 symposium 339 podcast 3328 | Drenthe → Hoogeveen 2294 |
| caleidoscoop.nl | Caleidoscoop | The website offers information about dissociative disorders, including definitions, diagnostic criteria (such as DSM-5), treatment methods, and common forms like dissociative amnesia and DPDR. Caleidoscoop provides various services for members and their families, including peer support through discussion groups, online workshops, and personal stories. There is also a library and a knowledge agenda. The organization regularly organizes events, such as a statutes celebration in Amersfoort, and emphasizes collaboration with other organizations and projects aimed at increasing the visibility of dissociative disorders. | Mental & Emotional Well-Being → Mental Disorders 15 | peers 89 mission 1000 association 8562 event 45199 | |
| care4neo.nl | Care4Neo | The website offers information, support, and peer support contact for families with premature babies and infants with health problems. Current news articles, research, and care initiatives, as well as stories from fellow sufferers, are shared. Care4Neo launches various campaigns and initiatives, such as a GoFundMe campaign and offers vacancies for experienced parents. | Medical Care & Services → Pediatric & Child Health 2121 | premature 14 podcast 3328 campaign 3428 parent 4318 story 8285 research 8967 | |
| psoriasispatientennederland.nl | Psoriasispatiënten Nederland | The website offers information about the characteristics, treatment, and outlook of psoriasis, as well as the latest scientific news. A forum is available for peers to share their experiences and support each other. Members receive the ‘Psoriasis’ magazine four times a year and have the opportunity to receive a free trial issue. | Skin Conditions → Psoriasis 14 | psoriasis 24 forum 1362 magazine 2182 association 8562 | |
| vereniginggain.nl | GAIN | GAIN emphasizes the importance of good hearing as a fundamental right and offers rapid, personalized treatments and solutions without obstacles. The website covers a wide range of topics related to hearing problems, including deafness, tinnitus, hearing protection, dementia, and balance issues. GAIN describes six key pillars: education, quality, innovation, knowledge sharing, collaboration, and advocacy, which guide the organization and its members. | Audiology → Hearing Problems 238 | hearing protection 107 hearing aids 146 dementia 674 prevention 1763 | |
| icpatienten.nl | Interstitiële Cystitis Patiëntenvereniging | Interstitial cystitis (IC) is a rare and painful bladder condition, not caused by an infection and often affects women, who experience a ‘full bladder’ sensation and frequent urination. The condition can be related to autoimmune diseases and is characterized by an inflammation of the bladder that often causes long-lasting symptoms, such as urine loss and pain in the pelvic area. The ICP association advocates for the interests of people with IC/BPS and offers a platform for peer support, information, advocacy and access to relevant downloads and volunteer work. | Men’s Issues → Urology 176 | bladder 19 volunteer 8367 association 8562 | |
| pvvn.nl | Neuromodulation Patient Association PVVN | The association organizes national and regional meetings, offers peer support, and is present at trade fairs, both physically and online. The website covers various neuromodulation indications, including chronic nerve pain, bladder and bowel problems, and neurological conditions such as epilepsy, Parkinson's disease, and spasticity. In addition to information about treatments and indications, the website provides links to relevant information, contact persons and opportunities to become a member or to assist as a contact person. | | stimulation 41 peer support 68 indication 164 pain 1919 membership 10442 | |
| nee-eten.nl | Nee-Eten! | The website contains information about food refusal and tube feeding, including an informational video, a conversation guide for discussions with healthcare providers, and experiences of other parents. Nee-Eten! organizes various activities, such as contact days, family days and symposia, to support parents and share knowledge. The website offers information about membership, donations, newsletter sign-up, and contact details. | Medical Care & Services → Pediatric & Child Health 2121 | parent 4318 newsletter 6504 event 45199 | |
| scoliose.nl | Scoliosis Association | The website covers various aspects of scoliosis, including causes, types of treatments (such as braces and surgeries), and specific issues like scoliosis in adults, osteoporosis, and during sports and work. The website offers information on patient experiences, tips & tricks, speech preparation information, and advice on diagnosis. Publications and archives are also available. The Scoliosis Association is a volunteer organization that advocates for the interests of people with scoliosis and is currently seeking volunteers for the board. | Disease & Treatment → Chronic Diseases 1168 | vacancy 6598 membership 10442 treatment 21203 | |
| oivereniging.nl | Osteogenesis Imperfecta Association | Osteogenesis Imperfecta (OI) is a rare, congenital and hereditary bone disorder characterized by fragile bones. The website offers information on OI, including advice, resources, and medical aspects such as surgeries and dental care. The organization provides various services, such as an SOS page for emergencies, volunteer opportunities, and the possibility of donations and membership, with information on their finances and contact details. | Disease & Treatment → Rare Diseases 229 | help 864 volunteer 8367 | |
| fesinfo.nl | F.E.S. | The website covers various aspects of fibromyalgia, including diagnosis, causes, symptoms, treatments, and potential complications, and offers practical tips for daily life. F.E.S. offers a range of services such as peer support, education, legal advice, and a webshop with informational and book materials. The website facilitates collaborations and encourages volunteering, emphasizing F.E.S.’s role as a national patient organization advocating for the interests of individuals with fibromyalgia. | Disease & Treatment → Chronic Diseases 1168 | fibromyalgia 43 peers 89 membership 10442 | |
| epvn.nl | EPVN | The association was founded in 1992 by parents of children with Erb’s palsy to exchange information and promote peer support. The EPVN currently has over 300 members and organizes various activities, such as family days and anniversary celebrations. The website provides information about Erb’s palsy, registration for membership, ordering a picture book, and access to news, tips and activities. | Disease & Treatment → Neurological Disorders 100 | association 8562 membership 10442 | Montferland → Braamt 76 |
| ipso.nl | Brancheorganisatie IPSO | IPSO centers offer psychosocial care, peer support, and activities to people facing cancer, including former patients and family members. The IPSO centers collaborate with various organizations, such as hospitals and patient organizations, to provide accessible care. The IPSO organization strengthens the centers to create a warm and welcoming environment where visitors feel at ease and receive support. | Specialty Medicine → Cancer Care 97 | peer support 68 cancer 631 center 1115 care 12338 | |
| laposa.nl | Laposa | The association offers information about various craniofacial conditions, including what they are and the different types that exist. News updates, an agenda of events (such as a family day at Toverland), and research information are presented on the website. The website provides links to other relevant websites, such as BridgeWorks (for jobseekers with limited employment opportunities), ERN CRANIO (with informative videos about appearance and well-being) and Ouderkompas (for parents of sick children). | Social Services → Seniors 822 | condition 425 patient 4082 research 8967 news 15293 event 45199 | |
| neurofibromatose.nl | Neurofibromatose Vereniging Nederland | The NFVN provides information on various forms of neurofibromatosis, including NF1, NF2, and Schwannomatosis, covering topics such as characteristics, diagnosis, treatment, and care standards. The website offers various support options, including a care network, peer support, discussion groups, webinars, and podcasts, as well as accessible documentation, experiences, and blogs. The NFVN actively strengthens patients, family members, and professionals, organizing theme meetings and contact days, and publishing annual reports and other relevant publications. | Disease & Treatment → Diseases 829 | healing 1148 patient 4082 care 12338 | North-Holland → Zaanstreek-Waterland 482 |
| hchwa-d.nl | Vereniging HCHWA-D | The association caters to patients, carriers, potential carriers, caregivers, family members, and other involved individuals facing this condition. Through various sections including a care desk and research, the Vereniging HCHWA-D offers support and information. Recent research has been conducted to improve support outside of Katwijk. The association is supported by volunteers and accepts donations. A newsletter is available to stay updated on the latest developments, and an ongoing study is underway. | Rare Diseases → Genetic Disorders 48 | disease 285 association 8562 membership 10442 care 12338 | South-Holland → Katwijk 2183 |
| smitvisch.nl | Cees Smit | Cees Smit was born with severe hemophilia and has dedicated over fifty years to patient advocacy and scientific work on the condition. He received an honorary doctorate in 2003 for his contributions and his autobiography, ‘Surviving hemophilia,’ was published in English in 2020, with a Dutch version planned for release in 2021. The website provides information about his publications, work related to food and nutrition, and his passion for painting, linking to related resources like ‘Surviving hemophilia’ and the Dutch Platform Patient. | Disease & Treatment → Medical Conditions 47 | autobiography 50 publication 2018 healthcare 2316 nutrition 4935 paint 8747 | |
| galactosemievereniging.nl | Galactosemie Vereniging Nederland | The website offers information about what galactosemia is, early symptoms and diagnosis, and living with the condition. There is a section dedicated to practical information such as the diet, offering a 6-step plan for patients after diagnosis, and helpful links. The GVN organizes events, publishes the experiences of members, and offers opportunities for donation, membership, and volunteering to improve scientific knowledge and the quality of life for patients. | Essential → Health 91589 | donation 5110 membership 10442 event 45199 | |
| wijnvlek-sturgeweber.nl | Nv WSWs | The association strives to advocate for the medical, social and societal interests of people with this condition and their families. The website provides information about events such as scientific congresses, contact days, discussion groups and information days. Members and visitors can register for events, donate, become a member and use the website for information about the organization. | Disease & Treatment → Diseases 829 | association 8562 member 10154 event 45199 | |
| voicesforwomen.nl | Voices for Women | The website provides a platform for women with unexplained health problems to share their experiences and collaborate within a community. Various resources are offered, including personal stories, blog posts, articles, webinars, podcasts, and surveys, aimed at mapping knowledge gaps and raising awareness. The organization encourages visitors to register as members, donors, or volunteers and to report their experiences through a reporting point and a petition to contribute to the improvement of healthcare. | Health → Medical Care & Services 29461 | health issues 17 petition 223 survey 370 donation 5110 community 7931 | |
| cardiomyopathie-onderzoek.nl | Stichting Cardiomyopathie Onderzoek Nederland | The foundation collaborates with research institutes, hospitals, and other patient organizations to investigate hereditary heart diseases and advocate for the interests of carriers. It provides patients with stories, peer support, and information on research such as genetic testing, and promotes scientific research into the mechanisms of cardiomyopathy and Hypertrophic Cardiomyopathy (HCM). The website also offers news, blogs, videos, and information about patient days and the importance of taking care of your heart. | Disease & Treatment → Cardiovascular Diseases 91 | genetics 104 hospital 560 patient 4082 research 8967 | |
| itp-pv.nl | ITP Patient Association Netherlands | The site offers information about the causes, diagnosis, treatments, and latest developments in ITP. Peer support meetings are also organized, and there is an overview of planned activities and news. The website contains an explanation of what ITP is, including a description of the disease and the function of platelets. | Disease & Treatment → Rare Diseases 229 | news 15293 treatment 21203 | |
| hartgroep.nl | Hartgroep Nederland | The foundation was founded in 2015 and is entirely run by volunteers, offering a range of services including peer support, patient leaflets, and cardiac rehabilitation. Hartgroep Nederland represents the interests of its members with local and national governments and provides hybrid peer support through Zoom. The organization also offers courses via Inspired Training, aimed at promoting healthy lifestyles and supporting younger heart patients. | Disease & Treatment → Cardiovascular Diseases 91 | peer support 68 lifestyle 2918 volunteer 8367 course 14728 | |
| hme-mo.nl | HME-MO vereniging Nederland | HME-MO is a rare genetic condition affecting approximately 1 in 50,000 people, with approximately 1000 people in the Netherlands living with the condition. The presentation of HME-MO varies significantly, ranging from mild cases with few osteochondroms and minimal complaints to severe cases with numerous osteochondroms, growths, and significant pain and/or mobility problems. The website provides information on the condition, treatments, genetics, scientific research, activities of the association, its history and goals, and options for becoming a member or donating. | Disease & Treatment → Rare Diseases 229 | mobility 1264 pain 1919 research 8967 member 10154 | |
| histio.nl | Histiocytose Nederland | The website contains information about the different forms of LCH, the relationship between LCH and diabetes insipidus, and the symptoms and treatments of the diseases. The organization offers opportunities for peer support contact via telephone, email, and a private Facebook group, and organizes an annual peer support day. Histiocytose Nederland is run entirely by volunteers and relies on donations to continue its activities, with the Fonds PGO being a key funder. | Disease & Treatment → Rare Diseases 229 | facebook 850 brochure 1642 donation 5110 | |
| nederlandsehoofdpijnvereniging.nl | Dutch Headache Association | The NHV is a part of the International Headache Society and provides information and advice for specialists and patients. The website offers access to information about the history, board, agenda, reports, and scientific publications of the association. The NHV provides advice on matters related to the care and research of headaches, including the relationship between migraine medication and the risk of COVID-19. | Neurology → Headache 109 | headache 182 publication 2018 association 8562 research 8967 member 10154 | |
| fabry.nl | FSIGN | The site contains patient information, care pathways, news, and articles about the disease, including information on biological medications and diagnosis. FSIGN offers patients, upon starting enzyme replacement therapy, the opportunity to obtain a standard infusion in loan and organizes events such as the FSIGN women's/men's day. The website also addresses the ‘Rare Disease Day’ and ‘3FM Serious Request’ events, which promote awareness of rare diseases. | Disease & Treatment → Rare Diseases 229 | gene 36 enzyme 40 disease 285 treatment 21203 | |
| hersenletselalliantie.nl | Hersenletsel Alliantie | The organization connects professionals at a national level through partners such as professional associations and patient organizations to share knowledge and prevent duplication of effort. Recent developments include the launch of the CVA Action Plan for the Netherlands, revisions to care standards, and the appointment of a new independent chairman. The website provides access to care standards, projects, and knowledge materials, including a flyer on safe cycling. | Neurology → Brain Injury 48 | brain injury 59 partner 4272 network 11123 care 12338 | |
| grinsyndroom.nl | Stichting GRIN syndroom | The website provides information about the GRIN syndrome, including its causes, characteristics, and ongoing research. It also offers support options and advice, such as home support, parental support, school choice guidance, and information about PGBs (Personal Budget). The foundation maintains a patient registry, a newsletter, patient stories, and links to relevant resources. | Anatomy & Systems → Neurology 1340 | mutation 27 patient 4082 research 8967 | |
| nvoo.nl | NVOO | The NVOO is an association committed to representing and advocating for the interests of people with over/obesity in the Netherlands and offers a community where members can meet and get to know each other. The website provides various topics, such as treatments, lifestyles, and scientific articles about obesity, including information on BMI calculations and a knowledge base with reliable information. An online coffee break is offered to allow members to get to know each other and share experiences, and the website encourages users to join and contribute to the community. | Health → Medical Care & Services 29461 | obesity 67 knowledge base 569 lifestyle 2918 community 7931 membership 10442 treatment 21203 | |
| dutchthyroid.nl | Dutch Thyroid Cancer Group | The DTCG works collaboratively with various specialisms, including surgery, endocrinology, and radiology, to analyze and improve thyroid cancer treatments. The organization hosts several meetings, such as symposia and congresses, to share knowledge and promote collaboration. The DTCG also provides a platform for developing and coordinating new projects related to thyroid pathology. | Disease & Treatment → Rare Diseases 229 | collaboration 16036 treatment 21203 | North-Holland → Amsterdam 41253 |
| mensenmetbrandwonden.nl | Vereniging van Mensen met Brandwonden (NWDI) | The website covers various topics related to burns, including post-care, skin therapy, peer support, and information on the physical and psychological consequences. There's a section for different needs, such as ‘How to Move Forward?’, ‘Activities’, ‘About Burns’, ‘Work and Legal Assistance’, and ‘Peer Support’, targeted at specific groups (children, youth, adults). The association actively seeks new board members and shares experiences through stories and an agenda with events, such as Burn Awareness Day and online coffee hours. | Specialty Medicine → Specialized Healthcare 34 | burns 13 work 3122 story 8285 | |
| ruginfo.nl | Dutch Association of Back Pain Patients 'de Wervelkolom' | The website covers a wide range of conditions of the spine, including hernia, discopathy, Scheuermann, scoliosis, ischias, and spondylosis. The site offers a choice aid to find suitable care institutions based on personal wishes and condition, with the possibility to compare different institutions. The association also provides choice maps and other tools to help patients make decisions about their treatment, such as surgery or medication. | Podology → Musculoskeletal Disorders 15 | choice aid 19 spine 125 back pain 373 pain 1919 association 8562 | |
| monitor-ic.nl | MONITOR-IC project | The MONITOR-IC project, initiated in 2016, involves several hospitals including Radboudumc, Canisius Wilhelmina Ziekenhuis, Bernhoven Ziekenhuis, Maasziekenhuis, Jeroen Bosch Ziekenhuis, Rijnstate, and Amphia Ziekenhuis, and UMC Utrecht, tracking patients for up to two years after their ICU admission. The collected data is utilized for scientific research and to enhance the quality of care provided to intensive care patients. The project receives support from the Family and Patient Centered Intensive Care – FCIC, which advocates for the interests of former and current ICU patients and their families, and offers access to information and support through its website. | Hospital & Acute Services → Intensive Care 17 | ic 20 patient 4082 data 5872 research 8967 care 12338 | Maashorst → Uden 1540 |
| crps-vereniging.nl | CRPS Patient Association | CRPS is a complication that develops after an injury or surgery to a limb, arm, or leg, with the severity of the pain not related to the severity of the injury itself. The website offers information about the disease, symptoms, diagnosis, treatment, recovery, and tips for daily life and relationships. In addition to information, the association provides peer support contact, self-management courses and a fund (Fonds Stichting Esperance) and publishes news, stories, webinars, and videos. | Pain → Chronic Pain 240 | injury 543 pain 1919 story 8285 course 14728 treatment 21203 | |
| pitthopkins.nl | Stichting Pitt Hopkins Syndroom | The Stichting Pitt Hopkins Syndroom was founded in 2009 by parents of children with Pitt-Hopkins syndrome, with the aim of advocating for the intangible interests of parents and caregivers of children with PTHS. Pitt-Hopkins syndrome (PTHS) is a rare condition characterized by mental retardation, a wide mouth, and intermittent hyperventilation. Approximately one in 250,000 newborns has this condition. Genetic cause of the syndrome is known since 2007, and the syndrome is caused by a deletion or variant in the TCF-4 gene. Knowledge of the syndrome and treatment approaches are still in their early stages. | Disease & Treatment → Diseases 829 | syndrome 21 stichting 481 parent 4318 research 8967 | |
| reumanijmegen.nl | Reumapatiëntenvereniging Nijmegen e.o. | The association offers movement programs, including water and land-based classes, with free trial lessons available. Furthermore, the association organizes various themed gatherings such as Reumacafés, outings, bingo and a Christmas brunch. The website features newsletters, updates on activities and information about ongoing research projects involving the UMC Radboud. | | movement program 39 rheumatism 219 research 8967 membership 10442 | Nijmegen → Nijmegen-Nieuw-West 58 |
| ichthyosisnetwerken.nl | Ichthyosis Network Association | The website presents detailed information about specific Ichthyosis conditions, such as Bullous Congenital Ichthyosiform Erythrodermia (BCIE) and the Chanarin Dorfman Syndrome. Patients can join relevant networks based on their specific form of Ichthyosis to share experiences and find support. The association offers events, publications, and practical tips, and has a donation program to support its activities. | Disease & Treatment → Diseases 829 | condition 425 patient 4082 association 8562 network 11123 | |
| ypsilon-amsterdam.nl | Ypsilon Amsterdam and surroundings | Ypsilon Amsterdam and surroundings is a regional branch of the national Ypsilon association, active in 45 regions across the Netherlands and committed to providing a perspective-oriented care. The website offers information about various activities, such as conversation groups, training courses, library services, and projects like ‘The Back Pack of Amsterdam’ which shares stories of people with mental vulnerability in Amsterdam. Ypsilon Amsterdam offers membership with benefits, including access to a network and support, and provides various services such as crisis services and caregiver support. | Family → Caregiving 18 | psychosis 21 story 8285 membership 10442 care 12338 training 28133 | North-Holland → Amstelveen 3180 |
| doneereennierbijleven.nl | Doneereennierbijleven | The website provides information and a procedure for both kidney patients and potential donors, including details on cross-over kidney donation. Calls for donors with specific blood types (A, AB, B) are published, with a list of potential donors and their contact information. The site addresses the costs of kidney donation and provides an overview of how cross-over kidney donation works and when it may not be successful. | Essential → Health 91589 | procedure 750 donor 757 patient 4082 | |
| lichenplanus.nl | Lichen Planus Vereniging Nederland (LPVN) | The website covers the different forms of lichen planus, such as lichen planus in the mouth, esophagus, genitals, skin, and nails, and specific varieties like Lichen Planus Actinicus. Information is available for both patients and healthcare providers, using folders, frequently asked questions, and patient testimonials, as well as practical tips on lifestyle and possible consequences. The website is linked to an association, LPVN, which offers a forum, a library, a medical advisory board, and opportunities for volunteering and advocacy. | Disease & Treatment → Diseases 829 | folder 300 healthcare provider 474 forum 1362 patient 4082 association 8562 | |
| praderwillistichting.nl | Prader-Willi Stichting | Prader-Willi syndrome is a rare genetic disorder characterized by features such as abnormal body composition, muscle weakness, hormonal imbalances, and an insatiable appetite. The organization provides information, support, and a platform for connection and knowledge sharing for patients, their families, professionals, and donors. In addition to the main website, the organization offers a range of services including newsletters, presentations, a Facebook page and a YouTube channel. | Rare Diseases → Genetic Disorders 48 | stichting 481 donor 757 | |
| huntingtonplein.nl | Topaz | The platform caters to patients, professionals, caregivers, and interested parties, offering various information and resources. The website includes topics such as news, agenda, handbooks, case studies, FAQs, instructional videos, and various themes. The Huntingtonplein was developed in collaboration with patients, caregivers, and professionals and offers, among other things, meetings, research, and care options. | Disease & Treatment → Diseases 829 | expertise center 29 handbook 194 knowledge 3528 patient 4082 agenda 4374 | South-Holland → Katwijk 2183 |
| hetbuikencollectief.nl | The Buikencollectief | The organization advocates for improved parental leave regulations, exemplified by the '21st Century Leave' petition. It offers a free online pregnancy course that helps women prepare for childbirth, utilizing short videos and exercises. The organization also supports healthcare professionals, directing them to the pregnancy course and encouraging them to promote it to pregnant women. | Health → Medical Care & Services 29461 | leave 84 healthcare professional 199 postpartum 464 childbirth 894 pregnancy 2739 course 14728 | |
| zorgbelang-overijssel.nl | Zorgbelang Overijssel | The website offers various services including transport complaint handling, client support, and advisory services for Wlz clients. Speaking hours are available for inquiries about healthcare, work, education, school, and financial matters, as well as dedicated telephone numbers for new Wlz clients and Wmo clients. The website publishes newsletters with current information on client support, inspiration events, developments in the social domain, and patient councils. | Government & Administration → Regional Government 367 | client support 42 participation 1430 healthcare 2316 complaint 6479 newsletter 6504 | Netherlands → Overijssel 39649 |
| dietistgo.nl | DGO | The site includes information about the board of directors, the annual plan, and frequently asked questions of the organization. There is an overview of dietitians, including a map, and a section for patients and caregivers. The website offers various materials such as folders, presentations, and information about events, such as the national DGO day. | Senior & Geriatric → Geriatrics 230 | elderly care 128 dietitian 299 folder 300 nutrition 4935 | |
| zeldzaamziek.nl | Stichting Zeldzaam Ziek | The foundation advocates for patients with rare diseases, fights for inclusivity in care and society, and seeks to raise awareness of the various aspects of living with such a disease. In September 2022, the foundation will launch a presence on social media (Facebook and Instagram) to collect personal stories. A book of interviews with patients and doctors about rare and chronic diseases is in preparation and is expected to be released in the summer of 2022. | Disease & Treatment → Rare Diseases 229 | disease 285 patient 4082 foundation 6678 story 8285 care 12338 | |
| belangenverenigingpatientenchiropractie.nl | Belangenvereniging Patiënten Chiropractie | The association is formed by and for chiropractic patients, providing a platform for support and information sharing. The website offers information on treatments, complaints, professional organizations, and reimbursement related to chiropractic care. The association has an office in Heerenveen and is active on social media platforms such as LinkedIn and Facebook. | Anatomy & Systems → Specific Conditions 205 | chiropractic 184 patient 4082 association 8562 | |
| lupuspatientengroep.nl | Lupus Nederland | The organization aims to support its members by collecting information, providing education, and promoting peer support. Recent activity has decreased due to a shortage of volunteers on the board. The organization will be dissolved as of January 1, 2017, due to the lack of board members. | Diseases → Autoimmune Diseases 31 | forum 1362 member 10154 | |
| vaog.nl | VAOG | Orthopedic medicine focuses on the non-surgical treatment of complaints related to the musculoskeletal system, such as joint problems and tendon injuries. The VAOG, founded in 1996, unites physicians specializing in orthopedic medicine and often practicing as general practitioners. The methods, based on the work of James Cyriax, have been further developed by Dutch orthopedic physicians and include injection therapies. | Podology → Orthopedics 1525 | member 10154 | |
| onlinecollectevoorals.nl | Stichting ALS Nederland | Stichting ALS Nederland is an organization committed to scientifically researching ALS, a neurological disease with a short life expectancy. ALS affects 1 in 400 people in the Netherlands, and most patients die within three to five years after the first symptoms appear. The website provides a way to create and share an online donation box to raise money for research and treatment. | Diseases → Neurological Diseases 21 | als 45 participation 1430 donation 5110 research 8967 | |
| atrxsyndroom.nl | Stichting ATR-x Syndroom Nederland | The foundation was established to connect parents and experts and to find answers to questions about the ATR-x syndrome, which affects approximately 25 boys in the Netherlands. The ATR-x syndrome, characterized by a severe developmental delay and specific facial features, is caused by a genetic abnormality and only occurs in boys. The website offers information about the syndrome, the foundation, downloadable folders, and opportunities to connect with other families. | Rare Diseases → Genetic Disorders 48 | syndrome 21 folder 300 family 6462 foundation 6678 | |
| neuspoliepensyndroom.nl | Neuspoliepen Syndroom | The association is aimed at individuals with a mild to severe form of the Neuspoliepen Syndroom, affecting approximately 300,000 people in the Netherlands. The disease can have a significant impact on the well-being and daily life of those affected, including loss of sense of smell and taste, a congested nose, and fatigue. The association provides information, peer support, advocacy, and supports initiatives for and by patients. | Disease & Treatment → Respiratory Diseases 83 | patient 4082 treatment 21203 | |
| mastocytose.nl | Mastocytose Vereniging Nederland | The website offers information about mastocytosis, mast cells, diagnosis, treatment, and scientific research. It includes a glossary, animations, newsletters, and details about the annual patient day. Information is provided on the association's history, vision, goals, secretariat, and activities such as digital gatherings and peer support. | Disease & Treatment → Rare Diseases 229 | association 8562 research 8967 member 10154 | |
| paragangliomen.nl | NVPG | The website contains information about paragangliomas, including their causes, symptoms, treatment methods, and heredity. It shares patient experiences and offers an online support group for those affected. The NVPG provides peer contact, a patient day and general member meetings, and advocates for the interests of patients, with expertise centers. | Disease & Treatment → Rare Diseases 229 | peer support 68 association 8562 | |
| actievoorduchenne.nl | actievoorduchenne.nl | The website offers the ability to create personal action pages and raise funds. Various events, such as the Duchenne 40, Duchenne Triathlon, and Duchenne Heroes, are presented. Visitors are also encouraged to donate, collect, and donate old electronics to raise money for research. | Disease & Treatment → Disease Management 35 | cyclist 135 electronics 971 fund 1063 campaign 3428 research 8967 event 45199 | |
| cmycml.nl | cmyCML | The platform offers information about the CML disease, life with CML, and tools such as a peer support forum and a personal health environment (PGO). cmyCML is developed by hematologists, patients, and patient organizations with the goal of helping patients take control of their own care process. Recently, patients actively participated in the development of the CML-StopCoach project to ensure it aligns with the needs of patients. | Disease & Treatment → Diseases 829 | pgo 10 medication 1164 forum 1362 research 8967 | |
| psmaforum.nl | Stichting PSMA forum NL | The forum was established in 2015 to consolidate knowledge and experience regarding the application of PSMA and is a multidisciplinary collaboration between medical centers. More than 300 medical specialists are affiliated with the PSMA forum NL, with expertise in nuclear medicine, urology, oncology, radiology, and radiotherapy. The platform collaborates with FAST, a collaboration platform for accelerating radio pharmaceutical innovation, and organizes regular congresses and networking events. | Medical Care & Services → Medical 188 | scan 790 forum 1362 therapy 7448 research 8967 collaboration 16036 | |
| stichtinglevenmetkanker.nl | Stichting Leven Met Kanker | The foundation was established in 1993 and has been active for 32 years, with a secretariat and a postal address. The website offers various sections, including news, information about cancer, patient associations, and potentially advertising opportunities. Donations can be made to a specific bank account number. | | secretariat 142 cancer 631 card 1975 donation 5110 foundation 6678 news 15293 | |
| pompeexpertisecentrum.nl | Spierziekten Centrum Nederland | The website presents information about Pompe disease, including treatments, care, diagnostics, disease progression, prognosis, and symptoms. The expertisecentrum maintains a database of Dutch patients with Pompe disease and supports scientific research. For patients, there is the possibility of contact with fellow patients through a forum, and encouragement to schedule an initial consultation with a referral from a doctor. | Diseases → Neurological Diseases 21 | healthcare professionals 235 patient 4082 research 8967 treatment 21203 | South-Holland → Rotterdam 25048 |
| hoornvlieswijzer.nl | Hoornvlies Patients Association | The website contains interviews with 27 patients with various corneal diseases, sharing their personal experiences with treatments and living with the condition. Users can register as participants to engage in an online community, exchange experiences, ask questions, and offer tips. The Hoornvlieswijzer is an initiative of the Hoornvlies Patients Association and will be further expanded in the future with more information. | Medical Care & Services → Ophthalmology 92 | healthcare provider 474 community 7931 treatment 21203 | |
| xlh-vereniging.nl | XLH Vereniging Nederland | The association strives for better care, more research, and serves as a partner for various organizations, including healthcare providers and pharmaceutical companies. The XLH Vereniging Nederland is a fully volunteer organization, relying on membership fees and donations, with the goal of applying for subsidies in the future. The website offers information about XLH, member stories, interviews, news, contact options, and membership opportunities. | Disease & Treatment → Rare Diseases 229 | patient 4082 donation 5110 research 8967 membership 10442 news 15293 | |
| rownederland.nl | Stichting ROW/HHT Nederland | The disease of Rendu-Osler-Weber (ROW), also known as Hereditary Hemorrhagic Teleangiectasia (HHT), is a rare inherited disorder that causes abnormal connections between arteries and veins, frequently affecting locations such as the nose, gastrointestinal tract, lungs, brain, and liver, and affects 1 in 5,000 people worldwide. The website organizes regular events, such as the Lotgenotendag (Fellowship Day) on October 18, 2023, and the HHT Europe meeting in Leiden on November 4-5, 2023, to connect fellow patients and provide information about the disease and the latest developments in treatment. The foundation facilitates contact between fellow patients and their relatives, and brings together patients, doctors, and scientists to stimulate scientific research into ROW and ultimately improve the quality of life for patients. | Disease & Treatment → Rare Diseases 229 | rowing 243 patient 4082 research 8967 event 45199 | South-Holland → Leiden 7089 |
| pvap.nl | Acute Porphyria Patient Association (PVAP) | The association was founded in 2018 by patients with acute porphyria and aims to provide a platform for knowledge sharing and support. The website contains information about the different types of porphyria, symptoms, diagnosis, treatment, and how to prevent an attack. Furthermore, patient stories are shared and useful links and a medication alert/emergency plan are available. | Rare Diseases → Genetic Disorders 48 | attacks 12 diagnosis 1490 association 8562 treatment 21203 | |
| stichtingkabukisyndroom.nl | Stichting Kabuki Syndroom | The website provides information about the Kabuki syndrome, including an A-Z overview, research, and an overview of studies. Various ways to help are offered, such as donating, recurring gifts, legacies, starting campaigns, and becoming a friend of the foundation. The foundation organizes various activities such as the Kabuki Mile, the Kabuki Cafe, and the Family Day, which are aimed at strengthening experiences and sharing knowledge. | Disease & Treatment → Rare Diseases 229 | donate 77 foundation 6678 | |
| gbsexpertisecentrum.nl | gbsexpertisecentrum | The website offers information about GBS, including peer support experiences, treatment options, disease progression, diagnostics, and important considerations. The GBS Expertisecentrum consists of doctors and researchers focused on developing optimal diagnostics, care, and treatment for GBS patients. The website includes a research page providing updates on ongoing research into the causes and treatment of GBS. | Anatomy & Systems → Neurology 1340 | question 2261 patient 4082 research 8967 treatment 21203 | South-Holland → Rotterdam 25048 |
| sgaplatform.nl | SGA Platform | The platform aims to protect the interests of patients concerning the reimbursement of growth hormone, as medication reimbursement is not always guaranteed. The platform organizes a member day with a program geared towards children and young people, allowing them to connect with age-peers undergoing growth hormone treatment, and lectures for parents on SGA and growth hormone treatment. The association relies on a sufficient number of members to effectively advocate for the interests of patients. | Anatomy & Systems → Specific Conditions 205 | reimbursement 465 member 10154 | |
| horstingstuit-foundation.nl | Horstingstuit Foundation | The foundation was established in 2015 by Hans Horsting and Mary Horsting-Stuit with the aim of supporting research projects focused on diseases that the pharmaceutical industry overlooks. Annually, they receive donations that are used to start and continue studies and research, in accordance with their objectives. The foundation supports research projects in specialized and university institutions. | Social Services → Welfare 1001 | institution 245 disease 285 donation 5110 foundation 6678 research 8967 | Hof van Twente → Markelo 399 |
| liberatelife.nl | Sobi | The website describes the ‘Liberate Life’ vision as an effort to fundamentally change the lives of people with rare diseases and offer them new opportunities. Various categories are offered, such as ‘Living with Hemophilia,’ targeting parents, young adults, and older adults with the disease, and a section with frequently asked questions. The website introduces a group of people called ‘Liberators’ (Arni, Erik, Hans, Jose Antonio, Paola) who support Sobi’s vision. | Disease & Treatment → Rare Diseases 229 | opportunity 581 dream 883 | |
| paget.nl | Dutch Paget Patient Association | Paget's disease of the bone is a chronic bone disorder named after Sir James Paget, who first described it in 1877. Patients often experience weakened, deformed, or painful bones, which can be confused with other conditions such as arthritis or a hernia. Early diagnosis and treatment are important. The association provides information, peer support, and connects patients and doctors to raise awareness and promote early diagnosis. | Essential → Health 91589 | diagnosis 1490 pain 1919 patient 4082 association 8562 | |
| zeldzameaandoening.nl | VSOP | The website serves as an access point to reliable websites related to 12 different themes, including hereditary diseases and diagnosis. The website connects European policy for rare diseases with the organization of care in the Netherlands, and guides users through various themes and links to relevant information. The website provides access to information from the 24 European Reference Networks and the activities of European patient representatives, with the goal of informing and supporting Dutch patient organizations. | Disease & Treatment → Rare Diseases 229 | rare disease 12 theme 4015 network 11123 care 12338 | Netherlands → Utrecht 48901 |
| alpha-1nederland.nl | Stichting Alpha-1 Nederland | The foundation was established on April 4, 2016, with the aim of raising awareness of Alpha-1 and advocating for the interests of Dutch patients. The website contains extensive information about Alpha-1 Antitrypsine Deficiency, including risk factors, diagnoses, treatments, and related diseases. The site also offers testimonials from healthcare professionals and politicians, such as Prof. Dr. Rainer Wiewrodt and Member of the European Parliament Wim van de Camp, who express their support for Alpha-1 patients. | Disease & Treatment → Chronic Diseases 1168 | healthcare professionals 235 disease 285 patient 4082 foundation 6678 | |
| clientenraden-rivierduinen.nl | Rivierduinen | The website describes the legal framework (wmcz2018) that grants patients the right to participate in the policy of healthcare institutions through patient councils. Information is provided about the various patient councils within Rivierduinen, divided into regions (Alphen aan den Rijn/Gouda, Leiden/Duin- en Bollenstreek, Eetstoornissen Ursula, Rivierduinen Jong) and special councils (BaanBrekendWerk). The site contains information about working groups, annual reports, complaint procedures, patient advocates, recovery courses, and other initiatives focused on patient participation and improving care. | Law → Civil Law 521 | patient council 17 participation 1430 policy 2149 healthcare 2316 region 5412 | Noordwijk → Noordwijkerhout 1099 |
| williams-syndroom.nl | Dutch Williams Beuren Syndrome Association | The website provides general information about the Williams Beuren Syndrome, including characteristics, medical information, tips and frequently asked questions. There is a knowledge platform with articles, news and activities for members. The website offers information and support for different age groups (baby, toddler, schoolchild, teenager) and for family members (brother/sister, grandparents) and professionals. | Disease & Treatment → Chronic Diseases 1168 | donate 77 challenge 1697 member 10154 news 15293 | Gooise Meren → Naarden 1154 |
| flevolandsepatientenfederatie.nl | Flevolandse Patiëntenfederatie | The organization supports the setup of resilient neighborhoods, particularly in Almere, through the Positief Gezond Almere transformation plan. Recently, a new board member, Marije de Bie, has been appointed and a board member, Johan Uijleman, has retired. The federation offers newsletters and provides information about collaboration in healthcare within the subregions of Flevoland. | Disease & Treatment → Rare Diseases 229 | patient organization 16 board 3438 newsletter 6504 collaboration 16036 | Flevoland → Lelystad 3180 |
| kwaliteitvoorzeldzaam.nl | VSOP | VSOP functions as a coordinating organization that monitors and promotes quality standards in healthcare for rare and/or genetic disorders. The website provides models for care networks and individual care plans that can be used to improve the quality of care. VSOP offers support to patient organizations and healthcare providers via telephone and email, including practical assistance and active guidance for projects. | Disease & Treatment → Rare Diseases 229 | rare disease 12 care network 13 | |
| nah-zeeland.nl | NAH Vereniging Samen Verder, Zeeland | The website offers information about NAH, available assistance and support, and the activities of the association. A key component of the association is the ‘Bruggenhoofd’ newsletter, which is regularly published and contains information such as personal stories and meeting reports. The association organizes a summer meeting in Vlissingen on June 28, 2025, inviting members and partners. | Neurology → Brain Injury 48 | nah 77 newsletter 6504 association 8562 member 10154 | Zeeland → Vlissingen 1614 |
| cmtexpertisecentrum.nl | Spierziekten Centrum Nederland | The specialist center offers expert advice on the CMT disease and includes information for patients and healthcare providers. The website details a study underway at the Amsterdam UMC (location AMC) investigating the cost-effectiveness of orthotic care for neuromuscular diseases. A forum is available for patients to connect with others via the website https://www.iemandzoalsik.nl/. | Anatomy & Systems → Neurology 1340 | study 720 forum 1362 | Amsterdam → Southeast 815 |
| med-sed.nl | Vereniging Med-Sed | The association aims to provide information, peer support, and advocate for the interests of patients with MED and SED. MED stands for Multiple Epiphyseal Dysplasia, and SED stands for Spondyloepiphyseal Dysplasia, both rare and inherited skeletal disorders. The association also encourages research and treatment of these conditions and refers to the expertise network for comprehensive medical information. | Disease & Treatment → Rare Diseases 229 | advocacy 357 association 8562 research 8967 | |
| alzheimeronderzoekfondslimburg.nl | Alzheimer Research Fund Limburg | The website presents eight portraits of Limburgers with dementia, named ‘Together Ahead with Dementia’. The Alzheimer Research Fund Limburg originated from a collaboration between Health Foundation Limburg Alzheimer Centrum Limburg (ACL) and Health Foundation Limburg (HFL), both affiliated with Maastricht UMC+. The website offers information about research projects, webinars, events such as the Navenant Rally, and opportunities to donate or bequeath. | Neurology → Dementia 509 | dementia 674 webinar 870 patient 4082 donation 5110 research 8967 event 45199 | |
| samentrots.nl | Samen TrOtS | The website provides information on various Samen TrOtS groups, including Samen TrOtS Kids (for age groups 5-13), Samen TrOtS Jong (for age groups 12-30), and Samen TrOtS for adults (26+). The website documents activities and gatherings of these groups, with mentions of regions and seasons (such as Rotterdam, Eindhoven, and Zeeland). Samen TrOtS also organizes annual World TOS Days (WTD) and other events such as camps and informational workshops, with stories and poems from members. | Primary Education → Learning Resources 129 | tos 17 kids 84 camp 2466 region 5412 event 45199 | Overijssel → Kampen 2161 |
| nahnetwerkutrechtseheuvelrug.nl | NAH network Utrechtse Heuvelrug | Approximately 1 in 4 Dutch people has a brain disorder, with those with non-acquired brain injury, often following a stroke or traumatic brain injury, forming a significant group (around 65,900 people). Non-acquired brain injury refers to damage to the brain that occurs after birth, in contrast to congenital brain injury. The website discusses the consequences of brain injury on daily life, the different phases of treatment (acute, recovery, and chronic), and provides support for both the affected person and their families. | Neurology → Brain 53 | stroke 51 brain 481 family 6462 treatment 21203 | |
| levenmetspasticiteit.nl | Hersenletsel.nl | The site covers various aspects of spasticity, starting with initial signs and treatment options to tips for daily activities. Statistical data is presented about the prevalence of spasticity in people with stroke, multiple sclerosis, and brain injury, with references to scientific sources. The website emphasizes the importance of multidisciplinary treatment of spasticity and offers contact opportunities via the Hersenletsel.nl patient association. | Anatomy & Systems → Neurology 1340 | multiple sclerosis 39 stroke 51 symptoms 558 diagnosis 1490 treatment 21203 | |
| kwaliteitsregisterbasisechoscopie.nl | KNOV | The Kwaliteitsregister Basisechoscopie will be terminated on January 1, 2023, following approval by the members of the KNOV during the ALV (General Assembly) on September 9, 2022. Members with a membership in this register have until the end of this year to cancel their membership and receive a refund of overpaid amounts. For the declaration of echoes, registration in the Kwaliteitsregister Basisechoscopie is required, managed by the BEN. New echoscopists can register here with the BEN. | Medical Care & Services → Specialty Medicine 3657 | declaration 112 register 362 ultrasound 769 membership 10442 | |
| gripopparkinson.nl | Shanice | The program focuses on taking small steps in diet, movement, and how one handles situations, leading to a sense of control. The website provides a video course and an online store with information and courses about the causes of Parkinson’s. Opportunities for online advice, analysis and blood tests are offered. There's also a newsletter for updates on Parkinson's. | Neurology → Parkinson’s Disease 98 | video course 22 parkinson 120 knowledge base 569 recipe 5142 newsletter 6504 | |
| joubertnederland.nl | Stichting Joubert Nederland | The foundation provides concrete (financial) assistance to Joubert syndrome patients and their families. The mission of the foundation is to increase awareness of the Joubert Syndrome to create more support and understanding. The vision of the foundation is to bring together Joubert syndrome patients and their families, expand knowledge, and provide worry-free days for entire families. | Social Services → Welfare 1001 | knowledge 3528 patient 4082 family 6462 foundation 6678 | |
| vved.nl | Vereniging voor Ectodermale Dysplasie | The website offers information about Ectodermale Dysplasia, including an explanation of the condition, its symptoms, and possibilities for early diagnosis and research. The association organizes annual information days where members and peers can share experiences, exchange knowledge, and be informed about developments related to ED. Furthermore, the association offers a buddy system to help members connect with specialists and peers, and supports their network through newsletters, sponsorship and an ANBI status. | Rare Diseases → Genetic Disorders 48 | sponsorship 2686 association 8562 | |
| parkinsonevents.nl | Parkinson Events Foundation | The website provides an overview of past tournaments, including reports and photo impressions of the events. Registration forms are available for the Ruud van der Horst tournament and the KNBB National Final. The website also publishes recaps of events, such as the Dutch Championship (NK) and the tournament in Oegstgeest. | Team → Billiards 365 | billiard 341 tournament 2476 registration 4366 report 4551 photo 7778 | South-Holland → Oegstgeest 800 |
| de-nvs.nl | Nierpatienten Vereniging Solidair | The website contains news, activities, agendas, articles, and recipes related to kidney diseases and the experiences of patients. The NVS offers a range of services, including a forum, a café, and information on dialysis and hospital care. The organization is a public benefit organization (ANBI) and accepts donations with tax deduction for donors. | Disease & Treatment → Diseases 829 | dialysis 35 cafe 1622 patient 4082 agenda 4374 member 10154 news 15293 | Brummen → Eerbeek 328 |
| groeihormoonpatient.nl | Groeihormoon Patiënten Collectief | GHPC collaborates with institutions, insurers, pharmaceutical companies, and healthcare providers to achieve the best possible care for these patients. The collective possesses the necessary knowledge and contacts to effectively represent the interests of children and adults using growth hormone. The website provides information about growth hormone, current developments in Dutch growth hormone care, and newsletters. | Disease & Treatment → Chronic Diseases 1168 | patient organization 16 institution 245 insurer 446 newsletter 6504 care 12338 | |
| niertje.nl | Nierpatiënten Vereniging Tilburg | The association originated from a patient council at the St. Elisabeth hospital in Tilburg. In 1978, DIALYSE VERENIGING TILBURG was founded, later renamed Nierpatiënten Vereniging Tilburg in 2005, and now accepts chronic kidney patients as members. The board of directors works with the management of the Dialysis Department of the ETZ hospital to represent the interests of its members and offers social activities. | Disease & Treatment → Chronic Diseases 1168 | dialysis 35 board 3438 association 8562 member 10154 | North-Brabant → Tilburg 8759 |
| incontactmetafasie.nl | Stichting in Contact met Afasie | The website provides information about aphasia and the organization’s activities. Visitors can sign up for the newsletter and indicate if they are a person with aphasia, a referrer, a subscriber, or otherwise. The foundation seeks ways to strengthen its work and help more people. | Social Services → Welfare 1001 | aphasia 31 newsletter 6504 foundation 6678 | |
| npvkampen.nl | Dutch Patient Association (NPV) | The NPV operates through three main methods: providing voluntary home assistance, offering information and influencing policy. The association offers both assistance services and the possibility to volunteer in Kampen and IJsselmuiden. Visitors can find information on the website about the association, the agenda, and the possibility to contact them. | Social Services → Welfare 1001 | agenda 4374 volunteer 8367 | Kampen → IJsselmuiden 380 |
| vriendvanmst.nl | Stichting Vrienden van Medisch Spectrum Twente | The foundation invests in facilities such as a greenhouse, The Wish Tree, and bicycle labyrinths for the dialysis department, and in research and science. Friends of MST focuses on projects that are essential but cannot be funded by the hospital budget, thereby improving patient well-being and health both within and outside of Twente. Donations are automatically withdrawn from the account, and the privacy of donors is guaranteed. | Charities → Fundraising 1005 | donation 5110 research 8967 | |
| creatiefbureaupaars.nl | Creative Bureau Paars | The bureau is specialized in inspiring, persuading, and motivating people through effective presentations and communication. It offers strategic advice on communication policies and patient engagement, as well as practical support for patient organizations. The core of their approach lies in collaboration, communication, patient engagement, and strategic goals, with a focus on result-oriented work and human connection. | | project management 3423 strategy 9379 communication 10162 collaboration 16036 | |
| stichtingnemo.nl | Stichting NeMO | Stichting NeMO focuses on small-scale and targeted research, aiming to provide a starting point for further medical solutions. The foundation works on various projects, both small and large, focused on studying neuromuscular and mitochondrial disorders. The activities of Stichting NeMO are largely dependent on donations, which can be received through various channels. | Research → Medical Research 384 | donor 757 research 8967 | |
| dvt-vianen.nl | DVT Vianen | The website details the various forms of assistance offered by DVT Vianen, including support for dementia patients, individuals living alone, and caregivers, as well as the possibility for individuals to become volunteers themselves. DVT Vianen is an initiative of several Protestant churches, emphasizing a mission of service and solidarity. The website highlights the importance of empathy and mutual support. The organization actively seeks new volunteers to expand its services and address the increasing average age of volunteers, which can sometimes lead to physical challenges. | Religion → Protestantism 3178 | solidarity 91 dementia 674 caregiver 1167 church 3439 volunteer 8367 | |
| slidia.nl | Slidia Nierpatiëntenvereniging | The association organizes activities such as outings and meetings with an informative purpose. Slidia collaborates with the Nierstichting and other associations to strengthen its work. The association is affiliated with the Slingeland Hospital dialysis and kidney center in Doetinchem and maintains close contact with the center's management. | Diseases → Kidney Diseases 32 | transplantation 20 dialysis 35 center 1115 region 5412 association 8562 collaboration 16036 | Gelderland → Doetinchem 2706 |
| effectengroeiremming.nl | Stichting Effecten Groeiremming | The foundation was established in response to the broadcasts of the television program Radar in 2021, after receiving hundreds of complaints from women. The foundation provides peer support, information, education, and advocates for the interests of women with complaints related to the use of hormones. The board of directors has decided to dissolve the foundation as of October 1, 2024, although the website will remain available until mid-2026 without updates. | Research → Medical Research 384 | peer support 68 radar 105 complaint 6479 research 8967 | |
| oncowand.nl | Stichting OOK | The Oncowand is a ‘listening cell’ that contains key stories from people with cancer and can be listened to through headphones. The project originated from a crowdfunding campaign in 2015, which was successful and made it possible to build the first version of the Oncowand. The Oncowand is temporarily displayed in various locations, such as hospitals and festivals, and the stories are collected via the Oncowand.nl website. | Visual Arts → Installation Art 576 | audio recording 16 story 8285 | South-Holland → Rotterdam 25048 |
| pijntoolkit.nl | Grünenthal | The Pijntoolkit offers convenient tips and information via email about coping with chronic pain, including explanations, videos, and images. The website states that chronic pain is defined as pain lasting longer than three months, and that 1 in 5 people experience chronic pain. Users can register for free and their data is recorded according to the GDPR, with the option to unsubscribe later. | Pain → Chronic Pain 240 | email 1012 pain 1919 tool 3907 data 5872 | |
| sepsisnederland.nl | Sepsis Nederland | The website offers information about sepsis, including symptoms, diagnosis, treatment, consequences, and follow-up care, as well as specific information about sepsis in children. Sepsis Nederland serves as a platform where people with experiences of sepsis can share their stories and connect with fellow patients, and organizes activities such as meeting days and the CMSM Round Table. The organization is committed to the quality of life of patients with sepsis, with a focus on self-determination and increasing awareness of the condition through education and funding a documentary. | Disease & Treatment → Chronic Diseases 1168 | documentary 1081 patient 4082 story 8285 | |
| apnbackoffice.nl | APN Backoffice | APN Backoffice provides services to patient organizations and foundations, offering expertise and resources to handle tasks that the organization cannot fulfill itself. The services include various tasks such as membership and donor administration, financial administration, secretarial work, archiving, and activity support, often through systems like BANSTER and KING. APN emphasizes the personalized service they provide, aiming for clients to focus on their mission while APN manages administrative and operational tasks. | Administration → Secretarial Services 851 Government & Administration → Government Organizations 1002 | archive 2067 administration 6587 | |
| parkinsoncafehaarlem.nl | Parkinson Café Haarlem & Omstreken | The cafe provides a platform for people with Parkinson’s and Parkinsonisms to meet and share experiences. Regular presentations are given by experts on relevant topics. Meetings are also organized for young people with Parkinson's who face specific challenges. | Neurology → Parkinson’s Disease 98 | parkinson 120 disease 285 presentation 1785 meeting 2381 tips 2789 | North-Holland → Haarlem 8674 |
| parkinsoncafe-woerden.nl | Parkinson Café Woerden | The website contains reports of meetings, yearbooks and photos of activities of the Parkinson Café Woerden. Documentation is available on the history of the café, including a 10-year overview and anniversary reports. The site offers information about subscribing to a newsletter, becoming a member of the Parkinson Association, and donation opportunities. | Village Focus → Village Organizations 683 | anniversary 670 report 4551 newsletter 6504 photo 7778 | Utrecht → Woerden 2642 |
| rugpatientenoverijssel.nl | Vereniging van Rugpatiënten Overijssel | The VvRO was founded in 1989 as a local branch of the NVVR, to better address the specific needs of back pain patients and promote social connections. The association focuses on back pain sufferers, chronic illnesses (such as heart disease, arthritis, and diabetes), and individuals who want to remain active in sports and activities, and for people who like to meet fellow sufferers. The VvRO collaborates with local governments, healthcare providers, and businesses to inform and support its members, with the goal of reducing isolation and promoting active participation. | Disease & Treatment → Chronic Diseases 1168 | connection 4007 sport 4228 therapy 7448 membership 10442 | Overijssel → Borne 812 |
| metapact.nl | Metapact | Metapact unites various metabolic patient organizations, fundraisers, and the United for Metabolic Diseases (UMD) collective. The organization focuses on improving diagnosis, treatment, and care for metabolic diseases by sharing knowledge and expertise. Metapact strives for a sustainable approach to metabolic diseases, building awareness and ultimately a world without these diseases. | Disease & Treatment → Diseases 829 | diagnosis 1490 community 7931 collaboration 16036 treatment 21203 | |
| lewybodydementie.nl | N.V. | The website offers various sources of information, including explanations of the disease, medication, stages, and comparisons with other forms of dementia. Several knowledge banks are available, providing information from medical care, abroad, and regarding different types of dementia. The site includes information on care, home care, administrative matters, finances, and legislation, as well as special links and downloads. | Disease & Treatment → Neurological Disorders 100 | knowledge bank 99 dementia 674 home care 827 medication 1164 care 12338 | |
| verenigingarm.nl | Vereniging Anusatresie | The association has nearly 400 members in the Netherlands and Belgium and provides support in navigating the healthcare system. The website offers information about what ARM is, how it develops, treatments, and potential peer support contacts. The organization hosts various activities, such as workshops, regional and youth days, and offers membership advice and a reference work. | Specialty Medicine → Specialized Healthcare 34 | insurance provider 157 healthcare provider 474 member 10154 | |
| reumadepeel.nl | Vereniging ReumaActief de Peel | The association offers support and activities for people with rheumatism and their partners. In addition to medical attention, the association encourages movement, lectures, and fun activities. Via a private Facebook group, members can contact fellow sufferers. | Chronic Diseases → Rheumatism 29 | rheumatism 219 newsletter 6504 association 8562 member 10154 | |
| patientenverenigingchiropractie.nl | Association of Patients of Registered Chiropractors | The association welcomes all patients of Registered Chiropractors. Registered Chiropractors meet specific quality standards and are affiliated with Dutch professional organizations such as the Dutch Chiropractic Federation (DCF), the Christian Chiropractors Association (CCA) and the Dutch Chiropractors Association (NCA). Patients can approach the association for questions about chiropractic, experiences with chiropractors, and assistance in submitting complaints. Complaints must first be submitted to the complaints officer of the SNRC, and in case of dissatisfaction, to the Stichting Geschilleninstantie Register Chiropractoren. | Government & Administration → Government Organizations 1002 | chiropractic 184 patient 4082 complaint 6479 | |
| parkinsoninnzvl.nl | Parkinson-Inn Zeeuws-Vlaanderen | The Parkinson-Inn Zeeuws-Vlaanderen aims to provide opportunities for people with Parkinson's and their loved ones to connect and share experiences in a relaxed and informal setting. The focus of the gatherings is on sharing, respect, acceptance, inspiration, support, and a safe environment. The website offers information about the gatherings, the program, ambiance images, and news related to the Parkinson-Inn. | Wellbeing & Complementary Services → Wellbeing 24 | parkinson 120 caregiver 1167 meeting 2381 atmosphere 5591 | Zeeland → Terneuzen 1517 |
| rpvboz.nl | Reuma Patiënten Vereniging Bergen op Zoom e.o. | The website contains information about the association, its board, and its activities. Various movement activities are offered, including Nordic Walking, Tai Chi Tao, and Fysio Move. The website includes an agenda with planned activities, peer support gatherings, and recaps of past events. | Chronic Diseases → Rheumatism 29 | rheumatism 219 agenda 4374 member 10154 | North-Brabant → Bergen op Zoom 2274 |
| mist-jong-dementie.nl | MIST | The website describes the situation of young people with dementia in the Netherlands, where 12,000 people between the ages of 25 and 65 are diagnosed, often later than with older dementia patients. The story of Tineke Reijbroek, whose husband received the diagnosis, and her search for information and support led to the establishment of the MIST project. The website promotes various photo exhibitions held in libraries in different regions, in support of Caregiver Week and World Alzheimer's Day. | Neurology → Dementia 509 | dementia 674 youth 3126 exhibition 5332 family 6462 | Wijdemeren → Loosdrecht 678 |
| weshare2care.nl | Stichting Share2Care | Share2Care connects patients with healthcare innovation and aims for patients to actively participate in the development of care. The foundation facilitates this process by involving patients in listening, designing, and testing solutions, and by sharing insights with healthcare innovators. Share2Care helps organizations with a social impact by offering a structured approach: listening, designing, testing, and ultimately innovating based on patient insights. | Entrepreneurship → Social Entrepreneurship 311 | impact 926 insights 976 patient 4082 research 8967 care 12338 | |
| bechterew-nijmegen.nl | Bechterew patient association Nijmegen and region | The website contains information about events such as evening programs, partner evenings, EK’s and sports competitions, as well as photos and videos. There is an overview of the board members, therapists, contact information, and other relevant pages. The association organizes activities and offers a platform for members to meet and share experiences. | Chronic Diseases → Rheumatism 29 | association 8562 member 10154 event 45199 | Vleuten - De Meern → Vleuten 574 |
| kankerpatientenorganisatienederland.nl | Kankerpatiënten Organisatie Nederland | The organization is part of Samenwerkende Patiënten Organisaties and is entirely volunteer-based. KON strives to provide cancer patients and their families with the most up-to-date and valuable information, harnessing the power of knowledge and support. The website also offers peer support connections, refers to experts such as psychologists and researchers, and provides access to data from the Dutch Cancer Registry. | Disease & Treatment → Diseases 829 | peer support 68 self-sufficiency 295 advocacy 357 cancer 631 research 8967 | |
| wasmh.nl | WASMH - PV Foundation and Patient Association | The Foundation and Patient Interest Association is non-profit and consists of patients who are committed to improving the lives of sick people and animals. The organization provides assistance to sick people and animals in financial difficulty, brings people together and conducts research into the healing effects of the hemp plant. The primary goal is, in addition to the legalization of medicinal THC hemp oil, to provide information about medicinal THC and CBD hemp oil, the physiological cannabinoid system and healthy lifestyles. | Cannabis Products → Cannabis 195 | thc 27 legalization 36 cbd 237 patient 4082 research 8967 | |
| zeldzamenvoorelkaar.nl | Zeldzamen voor Elkaar | The website provides information, support and volunteer opportunities for families with children who have rare diseases, emphasizing knowledge sharing and experiences. A key element of the website is the sharing of stories from families dealing with rare diseases, highlighting the need for support and understanding. The website promotes projects focused on raising awareness of rare diseases and providing practical assistance to the involved families. | Disease & Treatment → Rare Diseases 229 | rare disease 12 family 6462 story 8285 volunteer 8367 | |
| npvroermond.nl | Nierpatiënten Vereniging Roermond | The website contains information about medication for kidney damage and newsletters. Yearly program overviews from 2020 to 2024 are available. The website describes activities that have been organized in the past and includes photos. | Diseases → Kidney Diseases 32 | newsletter 6504 membership 10442 | Limburg → Roermond 2602 |
| fysiotherapie-engels.nl | Fysiotherapie Engels | The practice offers a wide range of treatments for adults, seniors, and children, including oncology physiotherapy, scoliosis therapy, and TEK consultant services. Fysiotherapie Engels was established in 2013 and is a co-founder of Therapie Punt Echt, having moved to a larger location in 2016. In addition to physiotherapy, the practice also offers services such as dietetics, pedicure, podotherapy, and psychology. | | cancer 631 physiotherapy 4688 practice 9089 treatment 21203 | Limburg → Echt-Susteren 874 |
| non-twente.nl | Nierpatiënten vereniging Oost Nederland | The website provides information about dialysis, household rules, privacy policies, and contact details of the association. Patient folders and newsletters are available, as well as an agenda with events organized by the association and the NVN (Dutch Kidney Patients Association). The website includes annual reports, such as the Donatiezorg 2024 annual report, and information on the differences between the regional NON and the national NVN. | Diseases → Kidney Diseases 32 | dialysis 35 patient 4082 agenda 4374 newsletter 6504 association 8562 | Overijssel → Twente 2578 |
| hartenbeweging.nl | Hart & Beweging Nieuwegein | The organization provides a secure environment where individuals with similar conditions can come together to exercise and play sports, which encourages motivation and adherence. They organize coordinated games and exercise programs, including responsible volleyball with adapted rules, under the supervision of professionals with expertise in heart and vascular diseases. Hart & Beweging Nieuwegein hosts Wednesday and Thursday evenings and offers a free trial period for new members to experience the atmosphere and their approach. | Professional Development → Supervision 788 | peers 89 volleyball 617 exercise 706 supervision 1184 sport 4228 | Utrecht → Nieuwegein 2264 |
| cno-scch.nl | CNO-SCCH | The association offers insights into diagnostics and treatment and strives to keep patients informed of the latest developments. Experiences of patients and professionals are shared to promote peer support and provide practical advice. The website provides information about the Expert Council, news, a magazine, and other resources for patients and professionals. | Diseases → Autoimmune Diseases 31 | diagnosis 1490 association 8562 treatment 21203 | |
| diastasenetwerk.nl | Stichting DiastaseNetwerk Nederland | The website provides reliable information about diastase and helps users find a local practice. DiastaseNetwerk connects users with care providers experienced in recognizing and treating diastase, both conservatively and surgically. The site facilitates access to expert groups and encourages contributing to improved diastase care. | Radio & Communication → Networks 341 | healthcare provider 474 practice 9089 | |
| reumatexel.nl | Reuma Patiënten Vereniging Texel | The website describes rheumatoid arthritis as a varied condition that can affect people of all ages, including children and young adults, with an estimated 3000 people on Texel experiencing rheumatoid arthritis. The Reuma Patiënten Vereniging Texel (RPV Texel) is an association that has made a fresh start since January 2024 and focuses on informing members and developing activities, including involving young people. The website provides information about the association, its activities, and includes a contact page and a link to the association's Facebook page. | Disease & Treatment → Diseases 829 | rheumatoid arthritis 21 association 8562 member 10154 | North-Holland → Texel 2208 |
| reumapvhaarlem.nl | Reumapatiëntenvereniging Haarlem en omstreken | The association was founded on June 17, 1982, and its goals include education, peer support, and exercise. RPV Haarlem e.o. informs its members about important changes in the healthcare system and refers to organizations that provide information about rheumatism. The association encourages movement and offers exercise groups to reduce complaints. | Chronic Diseases → Rheumatism 29 | rheumatism 219 exercise 706 exercises 1058 association 8562 member 10154 education 13471 | North-Holland → Haarlem 8674 |
| buic.nl | BUIC | The website outlines the services offered by BuiC, including diagnostics, prevention, and rehabilitation of abdominal and torso muscles. BuiC specifically addresses issues following abdominal surgeries, scar breaks, rectus diastasis, stoma procedures, and chronic back pain. The website contains information about the practice’s opening hours and address in Sint-Oedenrode, as well as contact details and links to the privacy policy and complaint procedure. | Physical Health → Rehabilitation 1009 | surgery 365 rehabilitation 1512 physiotherapy 4688 complaint 6479 | Meierijstad → Sint-Oedenrode 632 |
| josjeswinkels.nl | NEE-eten | The website contains information about Josje Swinkels' history as a writer, starting with writing stories and poems in her youth and her diaries after the birth of her children. A key element is her autobiographical novel 'Not all little girls become big', about which visitors can read more. The website also describes her professional activities as a journalist, including her period as editor-in-chief of the magazine 'NEE-eten' and her work for company magazines and patient organizations. | Literature → Authors 409 | blogging 112 diary 212 novel 440 journalism 632 writing 1504 patient 4082 | |
| medischtekstschrijver.nl | Sigrid Hendriks | Sigrid Hendriks writes custom medical texts for patients, their families, professionals, and the general public. She offers medical education on rare diseases and facilitates interactive sessions and discussions for patient organizations. Hendriks supports patient organizations as a facilitator and provides expertise in the healthcare landscape surrounding rare diseases, including network management and strategic advice. | | facilitator 116 healthcare 2316 patient 4082 education 13471 | |
| pvmt.nl | Patiëntenvereniging Manuele Therapie E.S. | The association represents the interests of manual therapists who use the Manuele Therapie E.S. method. Manuele Therapie E.S.® is a treatment method focused on treating complaints of the musculoskeletal system, where patients do not need a referral from a doctor. Membership in the association is free and offers benefits such as receiving news and influence on the association's activities. | | coverage 348 manual therapy 1320 method 1505 therapist 1890 patient 4082 association 8562 | |
| patientenzorgavl.nl | Stichting Patiëntenzorg AVL | The foundation employs approximately 55 volunteers who are committed to creating a pleasant atmosphere within the hospital for patients, families, and nursing staff. Volunteers offer various services, such as reproductions, a library, a mobile shop, and the care of flowers and magazines in the hospital. The foundation is entirely reliant on donations and volunteer contributions to finance its activities and support special projects. | Hospital & Acute Services → Hospitals 735 | hospital 560 patient 4082 donation 5110 atmosphere 5591 volunteer 8367 | North-Holland → Amsterdam 41253 |
| jnjwithme.nl | Johnson & Johnson | Johnson & Johnson strives to have a positive impact on patients and society through the development of new medicines and vaccines, focusing on providing clear and balanced information. The website aims to provide reliable information about diseases, emphasizing that the information does not constitute medical advice. Johnson & Johnson works with patients and patient organizations to understand the needs of patients and integrate this knowledge into the development of medicines and treatments, adhering to the EFPIA code of conduct. | Medical Care & Services → Pharmaceuticals & Pharmacy 453 | disease 285 medicine 435 patient 4082 collaboration 16036 | |
| sclerodermiefonds.nl | Sclerodermie Fonds | The website details scleroderma, including its local and systemic forms, and provides information on the prevalence of the disease in the Netherlands. Recent events and news are presented, such as annual reports, webinars, and infographics on treatment options. The website introduces the foundation, its team, and the opportunity to donate to research and awareness campaigns. | Body & Movement → Rheumatology 44 | disease 285 donation 5110 foundation 6678 research 8967 | |
| spiergewrichtologie.nl | Dr. Conger | The website provides information about the approach of Spiergewrichtologie, including diagnoses such as slipped vertebrae, misalignments, arthritis, and bursitis inflammation, often related to shortened Conger Muscles. Various complaints are discussed, such as menstrual pain, rib fractures, hip and knee pain, as well as more complex conditions such as pelvic instability and Whiplash, and the role of factors such as poor posture and dehydration. The website also contains information on treatment methods, including exercises, shoe lifts, and special treatments, as well as patient stories, articles, and information about Dr. Conger's PhD certification. | Podology → Musculoskeletal 12 | scoliosis 20 arthritis 51 complaint 6479 treatment 21203 | |
| sodales.nl | Sodales | Sodales provides membership management software for patient organizations, with various configuration options such as local, webbased or ASP. The website includes documentation, plugins, forums and a blog for users and developers of the Sodales software. The Sodales Working Group, a not-for-profit collaboration, develops and maintains the software in collaboration with various patient organizations. The software focuses on optimally supporting administrators in the creation of plans for informatization and facilitating optimal membership administration. | Government & Administration → Government Organizations 1002 | patient organization 16 membership management 22 administrator 161 documentation 452 software 8291 collaboration 16036 | |
| reumaverenigingtwente.nl | Reumavereniging Twente | The association organizes various activities, such as information evenings, exercise activities, and peer support groups, to keep people with rheumatism active and engaged. Reumavereniging Twente works to represent the interests of rheumatism patients in Twente by collaborating with healthcare providers, municipalities, and national organizations. People can join the association or donate to support the work of the Reumavereniging Twente. | Associations → Regional Associations 292 | peers 89 rheumatism 219 association 8562 | Overijssel → Losser 743 |
| gruunecross.nl | De Hersenstichting | The second edition of Gruune Cross took place on June 21, 2024, with 90 cyclists participating. During the event, a check for approximately €71,000 was raised for De Hersenstichting, which will be used for research into Alzheimer's. The website describes the event activities and thanks all participants and sponsors. | | cyclist 135 brain 481 donation 5110 research 8967 event 45199 | |
| oculaircoaching.nl | Oculair Coaching | The website addresses topics such as living with Multiple Sclerosis (MS), the use of a cane and walking aid, and the importance of body language. It also includes a reflection on the domino effect of small changes and the need to raise awareness about compliments. Oculair Coaching participated in an event at LIMOR, a transition service for homeless and shelter residents in Zoetermeer, and receives positive feedback on their approach. The site contains an agenda and potential future blog content, although no blog posts have been published yet. | Disease & Treatment → Neurological Disorders 100 | compliment 15 ms 55 body language 86 agenda 4374 coach 25810 | |
| olgasuppers.nl | Olga Suppers Taal & Tekst | Olga Suppers is a language teacher who focuses on promoting constructive and honest communication through language courses and personal coaching. The website offers a variety of services, including language courses in English and Dutch, tutoring, and information on various aspects of language such as punctuation, style figures, and language change. Visitors can contact Olga Suppers via phone or email, and find information about the website's structure and policies, including privacy, cookies, and disclaimer. | Language Learning → Language Education 427 | language 2016 communication 10162 course 14728 coach 25810 | |
| parkinsoncafemiddenbrabant.nl | Parkinson Café Midden Brabant | The website provides information about Parkinson’s disease and medical developments. People can connect with each other and share experiences to find help and advice. The Parkinson Café Midden Brabant organizes meetings every fourth Wednesday of the month, with a social character and often with a guest speaker. | Neurology → Parkinson’s Disease 98 | parkinson 120 meetings 1011 collaboration 16036 | Tilburg → Berkel-Enschot 412 |
| revalidatiepraktijkheuvelrug.nl | Revalidatie Praktijk Heuvelrug | The practitioners within the practice strive for qualitative and professional treatments according to the latest guidelines. Revalidatie Praktijk Heuvelrug guides clients in a professional and pleasant atmosphere, focused on their specific needs. Contact persons are Cuny Berkhout, Kevin Dame and Heidi Breevoort, who respond within 24 hours. | Neurology → Parkinson’s Disease 98 | parkinson 120 practitioner 127 rehabilitation 1512 mindfulness 1789 therapy 7448 treatment 21203 | Utrecht → Utrecht Hill Ridge 2054 |
| rnv-mn.nl | Regional Kidney Patients Association Midden Nederland | The association includes patients undergoing dialysis, individuals with kidney failure, transplant recipients, and their donors. The organization maintains contact with hospitals and dialysis centers, such as Antonius Ziekenhuis, Dianet Utrecht, Ziekenhuis Gelderse Vallei, UMC Utrecht, and Elysekliniek Woerden, and organizes meetings and outings. The association provides information to patients about kidney-related topics and welcomes suggestions from its members. | Disease & Treatment → Diseases 829 | dialysis 35 subsidy 2649 patient 4082 association 8562 | Utrecht → Woerden 2642 |
| rpv-spijkenisse.nl | Reuma Patiënten Vereniging Spijkenisse e.o. | The website provides information about moving with rheumatism, including guided hydrotherapy and strength exercises. It contains an agenda with fun outings and themed meetings for members. The website offers membership benefits such as participation in activities and discounts on other activities, as well as a free newsletter. | Disease & Treatment → Chronic Diseases 1168 | rheumatism 219 outing 982 movement 2304 newsletter 6504 membership 10442 | Nissewaard → Spijkenisse 1433 |
| rpvbaarnsoest.nl | Reumapatiëntenvereniging Baarn, Soest en omstreken | The association, founded in 1981, aims to bring together people with rheumatic diseases and represent their interests. In addition to peer support, the association offers activities such as workshops, lectures, exercise activities, and keeping members informed about relevant developments in the field of rheumatism, including the WMO. The website highlights the importance of self-sufficiency, cheerfulness, and informing members about relevant issues. | Chronic Diseases → Rheumatism 29 | rheumatism 219 association 8562 member 10154 | Utrecht → Baarn 1628 |
| seniorcall.nl | Seniorcall | Seniorcall is an independent fundraising agency with employees aged 55 or older, which aligns well with the target audience of its clients. The agency focuses on charities, patient organizations, and cultural institutions, supporting work that is important for society. Seniorcall offers opportunities for people aged 55 and older to remain active, particularly as call center employees. | Institutions → Cultural Institutions 475 | nonprofit 28 callcenter 52 fundraising 322 target audience 1108 culture 3922 employee 4429 | |
| theocuriere.nl | theocuriere.nl | Theo Curiëre (1946-2020) was a passionate artist who struggled with Parkinson’s and ALS. His work was characterized by clear colors, expressive forms, and subjects based on personal feelings and world events. In addition to paintings, he also created sculptures that incorporated everyday objects, and worked under the name ‘Foolish Fantasies’. | Visual Arts → Fine Art 322 | als 45 sculpture 1440 paintings 3907 | |
| tromboseoverlevers.nl | Tromboseoverlevers | The website includes a tool library, personal stories, and concise information about thrombosis. The platform uses social media to share content and create a community for fellow sufferers. In the future, more practical tools, personal stories, and improved thrombosis care will be offered. | Disease & Treatment → Cardiovascular Diseases 91 | thrombosis 14 tool 3907 community 7931 story 8285 care 12338 | |
| stichtingwitteraaf.nl | Stichting Witte Raaf | The organization is hosting a summer festival on June 21, 2025, featuring karaoke, music, and a prize festival, with a white overall as the dress code. The primary goal of the foundation is to accelerate diagnostics for white ravens (a specific group of patients) by shortening the time between scans and results. Stichting Witte Raaf offers a platform for patient advocates and their families and friends, where they can find information and support and help them to live a full life. | Social Support → Online Communities 859 | survival 79 cancer 631 scan 790 | North-Holland → Bergen 2009 |
| menstotaal.nl | Menstotaal | In September 2024, the therapist, in collaboration with Herman, began teaching Dutch to a group of Ukrainian students in IJsselmuiden. The therapist was diagnosed with breast cancer in January 2021 and has since undergone treatment, including chemotherapy, a breast-conserving surgery, and radiation therapy. She also experienced a stroke. The therapist and Herman remained positive throughout the personal challenges and recovery period, by continuing to run their business and by supporting each other. | Language Learning → Language Education 427 | language coaching 16 cancer 631 therapist 1890 | Kampen → IJsselmuiden 380 |
| kvmw.nl | MG MGF | The website provides a login portal for the MG MGF forum. It offers links to various media, including photos, music, and news. The page includes links to various software downloads and tools such as Bulk Rename Utility and DBeaver. | Social Support → Online Communities 859 | forum 1362 photo 7778 software 8291 news 15293 | Maastricht → Maastricht-Southeast 113 |
| elsfranssenfonds.nl | Stichting Els Franssen | The foundation offers financial support for medical, paramedical, and non-medical activities that improve the quality of life and survival chances of patients, taking into account the necessity and recognition by the medical sector. Existing support may include making available unregistered medicines and treatments, financing psychological support, rehabilitation, and adaptations to the living environment, and technical projects such as prostheses. The foundation is also active in financing scientific medical research and supporting institutions that focus on improving the well-being of people, and sometimes handles inheritances under the right of description. | Social Services → Welfare 1001 | living environment 177 medication 1164 patient 4082 research 8967 treatment 21203 | Netherlands → Limburg 31909 |
| locran.nl | Locran | The website tells about the city of Locran, located between Van Lommerheuvel and Allegrante, and its history, particularly the period in which a deadly disease, the ‘Black Lispel,’ threatened to devastate the population. It describes how the stadhouder (governor) hermetically sealed the district and heavily guarded the borders with steel nets and swan guards to stop the spread of the disease. The story shows that the measures were initially successful, unlike a previous disaster when the disease decimated an entire region before being stopped. | Literature → Fiction 1278 | guard 10 net 107 disease 285 city 1875 | |
| afasieschildergroepsittard.nl | Afasieschildergroep Sittard | The painting group was established to provide people with aphasia the chance to engage in painting, drawing, or sculpting as a hobby, supported by an instructor and volunteers. People with aphasia are welcome to attend a free trial lesson, provided they first contact the group to arrange preparations. The website is still under development and offers further information, including contact details and links. | Preparation → Courses 39 | aphasia 31 instructor 3126 volunteer 8367 paint 8747 | Sittard-Geleen → Sittard 1997 |
| fysiogrootdriene.nl | Fysiotherapie Groot Driene | The practice does not have a waiting list and offers appointments within two working days, which can be made by contacting them by phone or via an online contact form. The practice is part of Paramedisch Centrum Groot Driene and provides treatments for pregnancy, recovery, Parkinson's disease, and geriatrics, with an emphasis on balance, posture, and functional movements. The website publishes job vacancies for physiotherapists and information about reimbursement for physiotherapy within the basic insurance. | Health → Medical Care & Services 29461 | parkinson 120 pregnancy 2739 physiotherapy 4688 vacancy 6598 appointment 13510 treatment 21203 | |
| trisomie9.nl | Stichting Trisomie 9 | The website contains information about the condition itself, daily life with this abnormality, and relevant agencies that offer support and assistance. The foundation also works to promote scientific research related to Trisomy 9. The website includes news, contact information, and links to social media. | Rare Diseases → Genetic Disorders 48 | research 8967 | |
| bijniervereniging.nl | Bijniervereniging | The website provides information about various adrenal gland conditions, including Congenital Adrenal Hyperplasia, adrenal insufficiency, and Cushing’s syndrome. The platform facilitates a forum and peer support network for members, as well as an online shop and a bijnier app. The Bijniervereniging also offers services such as advice on medication use, support for applying for a welcome package, and information about membership. | Mental & Emotional Well-Being → Endocrinology 23 | medication 1164 forum 1362 membership 10442 | |
| ms-vereniging-nederland.kentaa.nl | MS Vereniging Nederland | The association brings together people with MS and those closely involved, fostering the sharing of knowledge and experiences and helping them maintain control over their lives. The association provides information about the disease MS and living with the condition. Through initiatives and donations, funds are collected that directly benefit people with MS. | Neurology → Multiple Sclerosis 64 | ms 55 initiative 1297 walk 2161 donation 5110 | |