| henkpas.nl | henkpas.nl | The website contains Henk’s account of his experience with military service in Lebanon, specifically in 1981. The site also offers information about Multiple Sclerosis, an incurable neurological disease that affects Henk’s life. There is a possibility for visitors to respond to the content of the website. | Personal → Personal Stories 1027 | respond 10 military service 11 lebanon 20 multiple sclerosis 39 disease 285 story 8285 | |
| 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. | Social Organization → Patient Organizations 259 | symposium 339 patient 4082 research 8967 | |
| sbhnederland.nl | SBH Nederland | The association shares experience knowledge and organizes peer support meetings to facilitate a fulfilling life with SBH. The website covers various aspects of spina bifida and hydrocephalus, including causes, diagnosis, treatment, rehabilitation, and the impact on different life stages. SBH Nederland offers information on practical assistance, social contacts, education, employment, financial support, and other relevant topics for people with SBH and their families. | | peer support 68 rehabilitation 1512 finance 5341 education 13471 | |
| touchspeak.nl | TouchSpeak B.V. | The website contains information about the TouchSpeak and TypeSpeak apps, which are available for iPad and iPhone. A special student version is also available. Users can download manuals for TouchSpeak and TypeSpeak in PDF format. The website includes themed pages that are automatically updated with current information, such as sports results and news articles. | Anatomy & Systems → Neurology 1340 | manual 96 app 4595 | |
| cpregister.nl | Dutch CP Register | The register provides a platform for children with cerebral palsy, their parents, and healthcare providers to share information and optimize care. The goal is to prevent unnecessary treatments and focus on treatments that actually work, with regular monitoring and timely intervention. The register offers feedback on children's development, signaling functions for deviations, and guidelines for future research to further improve the quality of care. | Anatomy & Systems → Neurology 1340 | registry 92 healthcare provider 474 parent 4318 research 8967 care 12338 | |
| kindengroei.nl | Stichting Kind en Groei | The website provides information about normal childhood growth, abnormal growth, and the associated diagnosis and treatment. The Stichting Kind en Groei collaborates with research agencies and pediatric endocrinologists worldwide on scientific research to improve knowledge about growth and developmental disorders. In addition, the foundation has set up a Clinical Research Bureau (CRB) to coordinate and conduct national and multicenter research, and offers stories of people with Prader-Willi syndrome. | Research → Medical Research 384 | diagnosis 1490 growth 4054 research 8967 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. | Social Organization → Patient Organizations 259 | research 8967 membership 10442 event 45199 | Gelderland → Apeldoorn 6996 |
| alzheimermuziekgeluk.nl | MuziekGeluk | The MuziekGeluk method reduces aggression, restlessness, and problematic behavior in people with dementia and makes caregiving tasks easier. This is achieved by using music as a powerful care tool. A book, ‘Music as a Companion in Dementia,’ offers practical guidance for caregivers, family members, and healthcare professionals to effectively utilize music in dementia care and improve the overall care process. The website also offers scientific research, training materials, a knowledge base, and a Spotify guide, all focused on optimizing the use of music in care for dementia, rehabilitation, cancer, and depression. | Neurology → Dementia 509 | playlist 231 dementia 674 method 1505 book 11396 care 12338 music 13170 | |
| swzzorg.nl | SWZ zorg | The organization provides services for children, adults, and their families, including care facilitation, outpatient support, and after-school care. SWZ zorg values personal attention and self-expression, utilizing smart technologies to improve quality of life and provide professionals with the space to utilize their expertise. The website offers information on various aspects of care, such as client information, treatments, and the different locations of SWZ zorg. | Home & Community Care → Social Care 146 | technology 6816 care 12338 | |
| huntingtonoostachterhoek.nl | Stichting Huntington Oost Achterhoek | The foundation promotes scientific research into Huntington's disease and provides information about the condition. The foundation does not make payments to founders or those involved in the foundation’s governing bodies. The website offers information on how to help and details about events and activities organized by the foundation. | Diseases → Neurological Diseases 21 | foundation 6678 research 8967 event 45199 | |
| 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. | Social Organization → Patient Organizations 259 | association 8562 research 8967 | |
| fragielex.nl | Fragile X Association Netherlands | The website contains information about Fragile X syndrome, including characteristics, developmental stages, genetic aspects, medication usage, and specific issues such as sleep problems and dental care. Personal stories are available to provide a better understanding of life with Fragile X. The website offers support and information for adults and children with Fragile X, including guardianship, supervision, mentorship, school choice, social networks, and housing options. There is also an expertise center for children up to 18 years old. | Organizations → Society 767 | personal story 41 donation 5110 association 8562 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. | Social Organization → Patient Organizations 259 | healthcare professionals 235 association 8562 research 8967 | |
| cpenontwikkeling.nl | PERRIN | The website is divided into domains such as motor skills, communication, and leisure activities to structure the information about development. Experience videos are presented, including the experiences of caregivers, young adults with CP, and parents. The website also offers a tool for preparing conversations with caregivers and the ability to customize and download the information. | Social Support → Online Communities 859 | domain 1811 conversation 1828 research 8967 | |
| prader-willi-fonds.nl | Prader-Willi Fonds | The website provides information about Prader-Willi Syndrome, including its cause, characteristics, and the risk of obesity. The foundation describes the various activities it undertakes, such as research, fundraising, knowledge expansion, and grant applications. Various actions and projects are presented, including sponsor race events and online donations, with examples of individuals participating. | Charities → Fundraising 1005 | fundraising 322 donation 5110 research 8967 event 45199 | |
| stichtingterre.nl | Stichting Terre | The website contains information about Rett syndrome, including causes, symptoms, and guidance. There is a section dedicated to research projects and expertise, mentioning the Rett Expertise Center and specific research areas. Stichting Terre invites visitors to donate, volunteer, or request promotional materials. | Wellbeing → Child Well-Being 28 | expertise center 29 donation 5110 volunteer 8367 research 8967 | |
| caudasyndroom.nl | Caudasyndroom | The site contains personal stories from people living with Caudasyndrom, offering a space to share experiences. It provides information on symptoms, work, living, and aids related to the Caudasyndrom. The site has sections for news, registering personal stories, and user login/registration. | Mental & Emotional Well-Being → Support Groups 12 | personal story 41 symptoms 558 | North-Brabant → Tilburg 8759 |
| adhd-nederland.nl | ADHD-Nederland | The website offers various services including private and work coaching, short NLP practitioner courses, and modules for NLP coaches, as well as a coaching masterclass. ADHD-Nederland emphasizes a human-centered approach that focuses on discovering the possibilities and talents of individuals with ADHD and ADD, rather than solely focusing on their challenges. The website also provides various online resources such as podcasts, blogs, and free e-books on ADHD. | Mental & Emotional Well-Being → ADHD 242 Entertainment → Podcasts 1067 | adhd 354 e-book 1060 podcast 3328 education 13471 coach 25810 training 28133 | |
| kmd.nl | KMD | The website describes KMD's approach, focusing on developing tools that help people with disabilities to live more independently. KMD offers various products, including communication tools, static and dynamic tools, software, and various switches and mounting solutions. A key product is the Grid Pad Go, specifically designed for people with conditions such as autism or speech impairments, enabling reliable remote communication. | Healthcare & Medical → Assistive Technology 62 | communication tool 15 mounting 448 tool 3907 software 8291 | |
| heservis.nl | HEServis | The website describes the mission to create solutions for specific needs that are currently unavailable, with a focus on practical applications. HEServis develops tools and interfaces upon request, as well as solutions for general use, and makes them available to a broader audience. The website explains that the developments are aimed at patients with various neurological conditions, such as Locked-In Syndrome, and at improving their communication and independence. | Healthcare & Medical → Medical Technology 382 | technology 6816 research 8967 communication 10162 | |
| spierziektencentrum.nl | Dutch Center for Neuromuscular Diseases | The center comprises a partnership of healthcare professionals and researchers from various national medical centers specializing in neuromuscular disorders. The website provides information on research projects, diseases, educational resources, and events related to neuromuscular conditions. It also highlights expertise centers and a mentor program designed to support young researchers in the field of neuromuscular research. | Research → Scientific Research 243 | expertise center 29 research project 37 event 45199 | Rotterdam → Center 382 |
| moebiussyndroom.nl | Moebius Syndrome Foundation | The website offers information about the characteristics, symptoms, and potential approaches to Moebius Syndrome. There is a story about a girl, Elena, with bilateral facial paralysis, from a booklet produced as the final result of a thesis project. The foundation was established in 1997 and has played a role in promoting research and providing support to patients and families over the years, with expertise from specialists such as Dr. Corrie Erasmus. | Charities → Fundraising 1005 | booklet 182 patient 4082 foundation 6678 research 8967 | |
| stichtingbenluc.nl | Stichting Ben en Luc | The foundation was established by Benjamin and Lucas' parents to help them live their daily lives as normally as possible, primarily by acquiring essential equipment. The foundation also focuses on improving Childcare and providing better diagnostic information about Guillain-Barré Syndrome, a neuromuscular disease that Benjamin suffers from. Currently, a wheelchair bus with a lift is being collected for Benjamin to reduce the physical burden on his parents and improve his mobility. | Disease & Treatment → Chronic Diseases 1168 | lucas 11 wheelchair 306 foundation 6678 | |
| 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. | Social Organization → Patient Organizations 259 | nah 77 caregiver 1167 event 45199 | |
| beatbatten.nl | Stichting Beat Batten | The foundation focuses on financing promising research into the deadly Batten’s disease, which affects children. Research is being conducted at Stanford University and in the Wilhelmina Children's Hospital, where existing medications are being tested and a new treatment is being developed. Due to a lack of government or pharmaceutical funding, Stichting Beat Batten’s mission is to raise money for this crucial research. | Medical Care & Services → Pediatric & Child Health 2121 | disease 285 foundation 6678 research 8967 treatment 21203 | |
| wijencp.nl | CP Netherlands | The website offers information on cerebral palsy, education, career choices, work and part-time jobs. It includes a forum where users can ask questions and share experiences. The website features inspiring quotes and videos (#ikhebcp) and information about the impact of cerebral palsy, such as birth rates and prevalence. | Social Support → Online Communities 859 | forum 1362 | |
| 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. | Social Organization → Patient Organizations 259 | association 8562 membership 10442 | Montferland → Braamt 76 |
| nah.nl | Professionals in NAH | The website describes the various forms of support offered, including work-related guidance, training opportunities, and support for caregivers. Information is provided about the causes of NAH, potential consequences, and the organization's operating procedures. Lectures, conferences, and partner days are also offered. The website outlines the core values of Professionals in NAH, such as good guidance, a non-managerial structure, and ongoing training for guides. | Personal Development → Guidance 781 Social Services → Caregiving 722 | nah 77 caregiving 368 referral 377 training 28133 | |
| vechtmeetegenals.nl | ALS | Amyotrophic Lateral Sclerosis (ALS) is a progressive disease that causes muscle weakness and eventually paralysis, with an average life expectancy of approximately three years in the Netherlands. Symptoms of ALS include a decrease in muscle strength, while senses like hearing, smell, and sight often remain intact, and some patients experience changes in behavior or cognitive function. ALS can also be hereditary, although the likelihood is relatively low. | | als 45 senses 133 behavior 1779 pain 1919 | |
| icms-science.nl | ICMS | The website describes ICMS as a movement to improve quality of life and maintain independence and social participation for people suffering from movement disorders. It focuses on joint and interdisciplinary scientific research to achieve this goal, highlighting innovation through collaboration between scientists, health funding organizations, and companies. The site offers programs and news, and encourages visitors to discover more about ICMS through various resources, including a calendar. | Research → Scientific Research 243 | science 491 innovation 4659 research 8967 collaboration 16036 | |
| expertisecentrumpws.nl | Expertisecentrum Prader-Willi syndroom | The center focuses on medical, behavioral, and practical aspects of Prader-Willi syndrome. Recent research by the Erasmus MC-Sophia/Stichting Kind en Groei team has shown that the resting metabolism and food intake in children with PWS change with age, with muscle mass being a significant factor. The website offers news, information about medical alerts, and opportunities to support the Prader Willi Foundation and donate. | Rare Diseases → Genetic Disorders 48 | research 8967 treatment 21203 | |
| meedoenmetafasie.nl | COPACA | The project, funded by ZonMw and the Hersenstichting, has been carried out by and for people with aphasia, speech therapists, and researchers. MAP is developing materials to improve communication in daily life, as there is currently no suitable material available. The project uses participatory action research, in which experiential experts and professionals work together to create new insights and knowledge. | Research → Research Projects 58 | experiential expert 18 aphasia 31 speech therapist 32 participation 1430 research 8967 | |
| rollenvoorspieren.nl | Rollen Voor Spieren | The foundation originated from the experiences of Glenn Wijntjens, who was diagnosed with Friedreich Ataxie in his youth and later used a wheelchair. Glenn raised 79,000 euros by participating in the 2018 IRONMAN Maastricht, justifying the creation of the foundation. In addition to the foundation, Friedreich Ataxie Nederland, a national organization, focuses on supporting research and raising awareness about the disease. | Competitions → Triathlon 231 | triathlon 193 donation 5110 foundation 6678 research 8967 | Limburg → Maastricht 6008 |
| nahzorg.nl | NAH Zorg | NAH Zorg focuses on providing assistance and advice to people with non-acquired brain injuries and their families. The organization also offers support for caregivers and family members, as well as expert advice and training for professionals and referrers. Clients rate NAH Zorg's care with a 8.6, and the organization is based on values such as prioritizing the person, care and involvement. | Social Services → Caregiving 722 | caregiver 1167 professionals 1966 | |
| hknn.nl | Huntington KennisNet Nederland | The network gathers knowledge, research, and the experiences of healthcare professionals and patients with this disease. HKNN provides an overview of specialized organizations in the Netherlands that offer support to individuals with Huntington’s disease, including dietitians, occupational therapists, physiotherapists, social workers, and psychologists. The network also publishes annual reports and organizes knowledge days and webinars to promote and share knowledge about Huntington’s disease. | Science → Medical Sciences 97 | disease 285 professionals 1966 healthcare 2316 knowledge 3528 patient 4082 research 8967 | Maastricht → Maastricht-Southeast 113 |
| daantheeuwesfonds.nl | The Daan Theeuwes Foundation | The website describes the foundation’s mission to provide young people with severe brain injuries with the best possible opportunities for recovery and reintegration. Each year, 19,000 young people suffer brain injuries, with 400 to 600 experiencing severe injuries, often starting with a coma and leading to physical and cognitive impairments. The foundation develops and supports rehabilitation programs and initiatives to increase the participation of these young people in society, focusing on creating a new future. | Disease & Treatment → Chronic Diseases 1168 | brain injury 59 young people 1045 society 1376 rehabilitation 1512 | |
| talebi.nl | Talebi.nl | The website focuses on individual coaching for ADHD, ADD, and autism, both at home and remotely, with attention to the impact of these conditions on various areas of life. The offerings include various forms of coaching, such as relationship coaching for partners with autism and ADHD, as well as specialized guidance based on more than 13 years of experience. The website includes a blog with articles on relevant topics such as autism, ADHD, and relationships, and offers the possibility of a free consultation. | Mental & Emotional Well-Being → Autism 958 | relationship coaching 74 adhd 354 autism 758 blog 13392 coach 25810 | |
| fshdexpertisecentrum.nl | Netherlands Muscle Disease Center | The expert center, managed by the Netherlands Muscle Disease Center, offers expert advice on the treatment of FSHD. The website describes the collaboration between various FSHD organizations in Europe and North America, with the goal of having 10,000 FSHD patients participate in research studies by the end of 2027. The website emphasizes the importance of patient registries for further research into FSHD and offers the opportunity to participate in a questionnaire study. | Medical Care & Services → Specialty Medicine 3657 | registry 92 healthcare provider 474 research 8967 treatment 21203 | Gelderland → Nijmegen 9384 |
| commap.nl | Commap | The website focuses on custom-made communication aids, alarm systems, and environmental control, specifically designed for people with conditions like Locked-In Syndrome, ALS, NAH, and Huntington's disease. Commap supplies both standard devices and equipment that operates on eye control, small movements, or even brainwaves, and offers advice when selecting appropriate tools. The website provides information on various communication aids, including text-based and pictogram systems, and eye control systems, and highlights the possibility of reimbursement by insurance companies. | Healthcare & Medical → Assistive Technology 62 | insurance company 251 alarm system 495 customization 1723 | |
| alslenteloop.nl | Stichting ALS Lenteloop | The seventh edition of the ALS Lenteloop on June 6, 2022, raised a record amount of €320,000,- with 9,246 donations and 1,225 participants. The proceeds from the ALS Lenteloop are used to finance various projects, including initiatives aimed at the mobility of ALS patients and their families, such as adapted buses in Hoorn. The ALS Lenteloop Bilthoven is an accessible event for everyone, including ALS patients and people with disabilities, where participants run or walk to raise money and celebrate the power of togetherness. | Outdoor Activity → Running 1829 | als 45 mobility 1264 participant 1934 donation 5110 event 45199 | De Bilt → Bilthoven 920 |
| zelfhelp.nl | Stichting Zelfhelp Nederland | The foundation offers self-help groups that aim to promote independence from compulsive behavior and the search for one's own solutions to problems. The groups are anonymous, without professional guidance or registration, and follow clear conversation rules for a safe environment. Stichting Zelfhelp Nederland originated in 1982 in the Amsterdam district of Buitenveldert and is united in the Buitenveldert groups, which are listed on the website. | Personal Development → Self-Help 1791 | self-help 52 meeting 2381 registration 4366 | Amsterdam → South 1488 |
| christelverbindt.nl | Christel Verbindt | The website provides training courses with practical examples focused on NAH and its impact on children, youth, and their families. Christel offers individualized coaching and support for parents, caregivers, and partners of individuals with NAH, providing insights and new perspectives. A training on grief and loss is offered, focusing on the impact of loss on daily life and the relationship of professionals to it. | Social Issues & Welfare → Disability Services 949 | nah 77 family 6462 coach 25810 training 28133 | |
| voorpleun.nl | Stichting Voor Pleun | The foundation focuses specifically on Pleun, a girl of almost 11 years old who suffers from Batten's disease (type CLN3). The website provides information about Batten's disease (also known as childhood dementia), its symptoms, and the impact on patients' lives. The foundation organizes campaigns and fundraising events to raise awareness and collect money for research and support for families affected by this disease. | Charities → Fundraising 1005 | awareness 1735 donation 5110 research 8967 | |
| postpolioexpertisecentrum.nl | Spierziekten Centrum Nederland | The Post-Polio Expertise Center provides expert advice on the treatment of postpolio and offers information on various aspects of the disease. Patients may require a referral to visit the center, and regular check-ups are possible. There are several research areas, including immunoglobulins and orthotics. The center conducts research into postpolio and offers a forum for individuals with similar experiences. | Anatomy & Systems → Neurology 1340 | expertise center 29 healthcare professionals 235 patient 4082 research 8967 treatment 21203 | North-Holland → Amsterdam 41253 |
| alswestland.nl | Stichting ALS Westland | The foundation organizes various activities, such as benefit concerts and fundraising campaigns, to raise money for research and support for people with ALS and their families. The website provides information about the disease ALS, ongoing activities, the experiences of volunteers, and the financial results of the foundation. Volunteers like Conny van der Meijden, Hans Koch, Marieke Bakker, Onno Remis and Corrie Lievaart-Vellekoop are actively involved in the foundation and contribute to various projects. | Disease & Treatment → Disease Management 35 | als 45 donation 5110 foundation 6678 | |
| werkenbijinteraktcontour.nl | InteraktContour | InteraktContour provides treatment, guidance, and care to individuals with ABI who, due to an unfortunate event, can no longer function independently. The organization offers various services to support these individuals in regaining their self-sufficiency and quality of life. The organization has 89 locations across the Netherlands and offers diverse job openings, including physiotherapist, household assistant, and residential caregiver. InteraktContour works collaboratively with clients, families, and a network of professionals to foster a valuable and independent life for individuals with ABI and encourages the personal development of its employees. | Neurology → Brain Injury 48 | brain injury 59 job vacancies 1241 network 11123 treatment 21203 | Gelderland → Nunspeet 1366 |
| mnnu.nl | Multidisciplinary NAH Network Utrecht | MNNU is a regional, multidisciplinary network focused on providing expert and coordinated care to patients with NCBI throughout hospital admission, rehabilitation, and the chronic phase. The website contains information about the causes and consequences of NCBI, as well as the ability to find specialized healthcare providers in the area. It also addresses initiatives such as the Community of Practice ‘Healthy Participation After NCBI’ and the Fitstroke-NAH exercise group, which aim to promote a healthy lifestyle and positive health. | Neurology → Brain Injury 48 | ncbi 13 healthcare provider 474 rehabilitation 1512 patient 4082 health 6366 collaboration 16036 | |
| stichtingcreatiefcentrumsittard.nl | Stichting Creatief Centrum Sittard | The foundation focuses on people who have experienced a change in their lives as a result of a non-genetic brain injury with or without aphasia. Art classes such as painting, drawing, and sculpting are offered, with guidance from an experienced instructor. The groups are small and accessible to wheelchairs, and volunteer support is available. | Visual Arts → Artistic Activities 22 | aphasia 31 trial class 311 atelier 1417 volunteer 8367 paint 8747 | Sittard-Geleen → Sittard 1997 |
| werkgroepderodebril.nl | Centrum voor progressieve spierdystrofie | The website covers topics such as ADL-cluster housing, personal budgets (PGBs), and the personal assistance supported by these budgets. There are blog posts and news articles on topics such as independent living, the search for appropriate care, and political initiatives surrounding the PGB. The site contains archives of blog posts and news articles from 2014 to 2016. | | pgb 197 politics 1259 care 12338 | |
| afasieflevogooi.nl | Afasiecentrum | The center offers targeted guidance, where the wishes and possibilities of the participants are discussed. The training sessions are conducted in groups, which promotes contact with other participants. Professional staff guide the training process and provide support with various aspects, such as communication aids and digital skills. | Religious Life → Groups 47 | aphasia 31 training 28133 | |
| levenmetsma.nl | SMA website | The website offers a conversation card to help patients and parents think about what they want to discuss with their healthcare providers. A network card is available to create an overview of available healthcare providers and potential referrals. An information card with helpful websites about living with SMA or chronic illnesses is provided. | Medicine → Oncology 230 | healthcare provider 474 appointment 13510 | |
| riding4nick.nl | Team Riding4Nick | The team organizes various actions throughout the year to raise funds for Duchenne Heroes. The website contains information about the Duchenne Heroes, a 700 km mountainbiking trip that is held annually across Europe. Information is shared about previous events, actions and the proceeds from these actions, as well as updates via social media. | Rare Diseases → Genetic Disorders 48 | duchenne 21 action 384 sponsors 2642 collection 7566 | Neder-Betuwe → Casterhoven 248 |
| stichtingunlocked.nl | Stichting Unlocked Home | The foundation seeks to draw attention to conditions considered too rare to be addressed. The website shares personal stories of individuals living with the Locked-in syndrome, such as Paul, Justin, and Andre, detailing their experiences after a traumatic event. The organization defines the Locked-in syndrome as a state of consciousness with complete paralysis of muscles, where the senses remain intact, often caused by a stroke. | Personal → Personal Stories 1027 | condition 425 brain 481 story 8285 | |
| opmaat-muziektherapie-begeleiding.nl | OpMaat Muziektherapie & Begeleiding | The therapist, Letty van Ooijen, provides services at home or on location, based on her extensive experience in elderly care. The website describes various aspects of her practice, including music therapy, support, RGM training, and training for caregivers. The therapist specializes in Neurological Music Therapy, Sensory Information Processing, and the Ronnie Gardiner Method, and is a registered therapist with SRVB. | Nursing & Support → Nursing 536 | music therapy 106 | North-Brabant → Eindhoven 11845 |
| mscentrum-adrz.nl | MS-Centrum ADRZ | The website covers various forms of MS, including multiple sclerosis (MS), clinically isolated syndrome (CIS), relapsing-remitting MS (RRMS), secondary-progressive MS (SPMS), and primary progressive MS, as well as related conditions such as Lyme disease and M. Devic (neuromyelitis optica). The website describes the diagnostic methods used, such as history taking, physical examination, MRI scans, lumbar punctures, and visual evoked potentials, and uses the McDonald criteria for diagnosis. The website provides information about the treatment of MS, including medications that slow the disease, strategies for shortening exacerbations (schubs), symptom management, and rehabilitation, as well as aspects such as diet, stopping medication and driving with MS. | Neurology → Multiple Sclerosis 64 | neurologist 10 multiple sclerosis 39 diagnosis 1490 rehabilitation 1512 treatment 21203 | |
| nahtrefpuntvoorneputten.nl | NAH Trefpunt Voorne Putten | The website describes NCBI as a term encompassing various brain disorders caused by factors such as a stroke, hemorrhage, concussion, brain tumor, cardiac arrest, or a CVA. Potential consequences of NCBI include paralysis, muscle weakness, sensory problems, visual impairment, epilepsy, cognitive difficulties such as slow thinking and concentration problems, memory issues, lack of overview, difficulty with multiple activities, language difficulties, impatience, restlessness, and constant fatigue, as well as a withdrawn lifestyle. The NAH Trefpunt organizes regular meetings for peer support groups and family members, where experiences are shared and guest speakers are invited to talk about relevant topics. | Online Communities → Support Groups 102 | ncbi 13 family member 72 meetings 1011 speaker 1481 | South-Holland → Voorne-Putten 297 |
| 2109.nl | Stichting 2109 | The foundation has designed a symbol to recognize people with dementia. The municipal working group ‘Nuenen Dementia-Friendly Municipality’ supports Stichting 2109 and offers residents of Nuenen the opportunity to apply for a free ‘Stichting 2109 badge’. Stichting 2109 was founded in honor of September 21st, World Alzheimer Day, and aims to raise awareness about dementia. | Nursing & Support → Nursing 536 | badge 129 symbol 149 dementia 674 municipality 6837 | North-Brabant → Nuenen ca 906 |
| vanezeltotmuur.nl | Stichting Van ezel tot muur | The foundation organizes activities focused on art, gathers knowledge, and supports research related to the Landau-Kleffner syndrome and related conditions. A key aspect of the foundation is the use of art as a communication tool, with creative projects and a special art collection. The foundation offers financial and practical assistance and has a contact person via email and telephone. | Creative Therapy → Art Therapy 56 | art 3856 research 8967 | |
| pijnnagordelroos.nl | Stichting Pijn na Gordelroos | The website offers information about shingles, postherpetetic neuralgia (PHN), and potential treatment options. It facilitates peer support and encourages research into the condition and improved treatment methods. The foundation advocates for patients' interests and seeks to amplify their voices within relevant organizations and the political sphere. | Disease & Treatment → Chronic Diseases 1168 | shingle 43 awareness 1735 research 8967 | |
| als-we-er-voor-gaan.nl | Als we er voor gaan | The foundation organizes events to raise money and support other foundations. Dragan Thijssens, a well-known personality, is personally involved with the foundation and shares his personal experience with ALS. The website contains information about the foundation, events, donations, and contact details. | Charities → Fundraising 1005 | als 45 donation 5110 foundation 6678 event 45199 | North-Brabant → Eindhoven 11845 |
| spibi.nl | Spibi Foundation | Children with Spina Bifida Aperta or Occulta, often referred to as ‘open back’, can have difficulty growing up due to daily medical treatments and social challenges. The Spibi Foundation aims to support these children and young people with Spina Bifida by overcoming obstacles, enabling them to achieve their goals, such as sports, education, and independent living. The organization offers concrete support, such as the provision of aids like wheelchair trikes, driver’s licenses, and bathrooms, as well as the organization of social activities and events. | Social Organization → Children’s Organizations 467 | back 100 aid 427 equipment 4143 event 45199 | |
| positieflevenmetadhd.nl | positieflevenmetadhd.nl | The website covers various topics related to ADHD, including coping mechanisms for holidays and winter depression, strategies to prevent procrastination and freeze, and the role of nutrition, AI, coaches, and books. Practical tools are presented, such as ADHD-proof bedrooms, office spaces, apps, and digital nomadism, as well as information on suitable professions and generating passive income. The site acknowledges the unique challenges faced by people with ADHD and encourages self-discovery, pursuing adventurous lifestyles, meditation, and achieving personal goals. | Personal Development → Self-Help 1791 | nomad 20 adhd 354 tool 3907 nutrition 4935 goal 4974 coach 25810 | |
| mousai.nl | Mousai | The organization’s mission is to make the internal experiences of individuals with conditions like Parkinson’s disease visible, fostering empathy and broader societal understanding. They seek to create inclusive environments by disseminating this message and offering resources that facilitate personal coping mechanisms. Mousai, the organization, undertakes various projects, including a music theatre piece by Maxim Shalygin exploring the challenges of living with Parkinson’s disease. | Personal → Personal Stories 1027 | parkinson’s disease 13 empathy 212 mental health 400 art 3856 music 13170 | |
| makeadifferenceformireille.nl | Stichting Make a difference for Mireille | The website provides information about Mireille’s medical history, the need for an operation in Barcelona, and the associated costs. The site offers opportunities to donate and sponsor the surgery, and keeps visitors updated on the progress. Updates, press releases, and personal video messages are shared to inform donors and express gratitude. | Charities → Fundraising 1005 | barcelona 76 surgery 365 donation 5110 | |
| jr63.nl | Jaap Rumping | The blog describes Rumping’s personal struggle with PLS and the challenges he faces in daily life. Rumping shares anecdotes and reflections on various aspects of his life, including rehabilitation, the use of assistive devices, transportation, and medical appointments. The website also contains information about a voice assistant (Talk4Me) and a personal voice assistant app, aimed at people with ALS. | Social → Personal Blog 2718 | wheelchair 306 rehabilitation 1512 taxi 2090 blog 13392 | |
| eigenwijsmetms.nl | Simone | Since her diagnosis in 2015, Simone has written over 700 blog posts. The blog covers a wide range of topics, including travel, hobbies, health, and emotions. The website is managed by WordPress and uses the ‘Dara’ theme by Automattic. | TravelStyles → Personal Travel 74 | diagnosis 1490 emotion 2169 wordpress 3551 theme 4015 travel 7210 blog 13392 | The Hague → Scheveningen 1625 |
| addpositief.nl | ADD Positief | The website presents blogs about ADD, helping readers to gain a deeper understanding of the disorder and stimulate personal growth. The site covers topics such as ADD symptoms, diagnosis, treatment options, daily strategies, and inspiring stories of people with ADD. The content of the blogs is written by experts and experienced individuals and is focused on providing valuable information, practical tips, and inspiration. | Personal Development → Self-Help 1791 | add 20 symptoms 558 diagnosis 1490 story 8285 strategy 9379 blog 13392 | |
| autismegeschikt.nl | Autisme geschikt | The website explains that autism is an invisible condition that manifests as a need for structure and a black-and-white way of thinking. People with autism can develop unique strengths as a result, such as a strict planning ability. The website defines autism as ‘Always Unique Totally Intelligent Sometimes Mysterious’ and emphasizes the importance of a positive self-image. The page describes the characteristics of autism, such as honesty, attention to detail, social limitations, and sensitivity to sensory stimuli. It also explains how the diagnosis is typically made by a psychologist or psychiatrist and that the prevalence of autism in the population is relatively low. | Mental & Emotional Well-Being → Autism 958 | characteristics 32 autism 758 structure 1305 diagnosis 1490 | |
| ocspecialisten.nl | De OC Specialisten | The website describes the services offered by De OC Specialisten, including advice, communication aids, consultations, training programs, and workshops. The organization consists of independent therapists with extensive experience in addressing complex support needs. The website provides information on locations, participation, technical support, and social media presence. | Mental & Emotional Well-Being → Autism 958 Healthcare & Medical → Assistive Technology 62 | therapist 1890 workshop 19325 training 28133 | |
| intercares.nl | Intercares Nederland B.V. | Intercares is currently hiring administrative staff and service engineers to strengthen its team. The company offers reliable and user-friendly access to homes and buildings, focusing on freedom and controlled safety. Intercares provides various services, such as maintenance and repair, project consulting, and training, specifically targeted at the healthcare sector. | Health → Medical Care & Services 29461 | staff 3405 training 28133 | |
| duchennenoord.nl | Stichting Duchenne Noord | The Duchenne Gala Groningen surpassed 1 million euros in donations in 2024, highlighting the impact of the charity event. Duchenne Noord, part of the Duchenne Parent Project, organizes an auction book and auction of artworks and other items to support the gala and families. Since 1995, the Duchenne Parent Project has been supported in Groningen by an annual gala dinner, thanks to the donations of sponsors and donors. | Charities → Fundraising 1005 | gala 114 auction 561 sponsor 1159 donation 5110 | Netherlands → Groningen 23734 |
| mindtherapy.nl | MINDtherapy | MINDtherapy develops, produces and delivers products for people with non-congenital brain injuries, aimed at increasing independence, self-sufficiency, and self-determination. The Daily-One is an Augmented Reality headset that guides NCBI patients through exercises in their own environment, tailored to their individual situation with the help of a therapist. The website describes the need for home exercises after rehabilitation, as supported by studies, and explains how the Daily-One makes this possible. | Healthcare & Medical → Medical Technology 382 | ncbi 13 rehabilitation 1512 | |
| sun-mivenema.nl | Sun-Mi Venema | Sun-Mi Venema’s story began in 2001 when she developed Locked-in syndrome following a brain thrombosis, significantly impacting her ability to communicate and live a normal life. Despite this limitation, she continued to write two books, ‘Gevangen in mijn binnenwereld’ and ‘Donkere Wolken,’ and recently published a third, ‘Dark Clouds,’ using a speech computer to communicate. Venema actively shares her experiences through lectures, media appearances, and speaking engagements at various national and international events, including conferences focused on spinal cord injury and acquired brain injury. | Personal → Personal Stories 1027 | lecture 1624 book 11396 | |
| 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. | Social Organization → Patient Organizations 259 | knowledge bank 99 dementia 674 home care 827 medication 1164 care 12338 | |
| liocoaching.nl | Lio coaching | The website offers information and coaching for personal and work-related development. Lio coaching provides support for individuals with ASS, ODD, AD(H)D or NAH, functioning as a caregiver mediator. Podcasts and articles are presented on themes such as grief, rituals, and embracing a new life after a traffic accident with brain injury, including information about rights and regulations. | Trauma & Recovery → Grief 907 | nah 77 grief 1577 podcast 3328 coach 25810 | |
| decognitievefitnesstrainer.nl | The Cognitive Fitness Trainer | The training combines physical exercise with mental challenges and relaxation, aiming to improve brain capacity and combat the symptoms of conditions like NAH, dementia, Alzheimer's disease, Parkinson's disease, and burnout. This method is recognized by the Trimbos Institute and supported by the Brain Foundation due to the positive impact of combining fitness exercises with cognitive activities and relaxation on the brain. Cognitive Fitness is also valuable for businesses, where participants experience improved work performance due to enhanced physical and mental health. | Body & Movement → Exercise 1005 | brain 481 exercise 706 fitness 2251 relaxation 3968 performance 7586 training 28133 | |
| bertprinsen.nl | bertprinsen.nl | The website is a renewed version of a previous site and is focused on providing support and information surrounding dementia. It includes materials such as a ‘handbook’ on coping with dementia, PowerPoint presentations for workshops, and suggestions for activities like using memory books and paintings to support. The author of the handbook shares his experience as a spiritual caregiver and offers background information and pastoral insight on the impact of dementia. | Nursing & Support → Nursing 536 | memory book 10 encouragement 27 dementia 674 care 12338 workshop 19325 | |
| isderafit.nl | isderafit.nl | The website addresses various conditions such as brain injury, epilepsy, PTSD and infertility, and presents bio-energy therapy as a potential solution. The Domancic method utilizes universal energy (Prana, Chi, Qi) to influence the body’s electromagnetic field and can be performed individually or in groups. The site offers information on various aspects of bio-energy therapy, including Biofit training, fitness, diabetes prevention and questions & answers. | Alternative Medicine → Energy Medicine 988 | prana 16 infertility 22 brain injury 59 | |
| pieterpad-hersenletsel.nl | Pieterpadsteppen-wandelen | The website provides information about participating in the Pieterpad and Pieterfietspad events, including registration forms and regulations. The event, scheduled for September 21, 2025, aims to increase awareness of NCBI and reduce misunderstandings surrounding this condition. In addition to practical information, the website offers photos, videos, and FAQs about NCBI, as well as an explanation of the ANBI status and the opportunity to collect donations. | Anatomy & Systems → Neurology 1340 | ncbi 13 pieterpad 98 registration 4366 donation 5110 event 45199 | |
| alfredtraptdoor.nl | Alfred Trapt Door for Ruben | In 2006, the initiator started cycling against Duchenne muscular dystrophy, and since then the annual Duchenne Heroes monster marathon has taken place. This marathon, consisting of seven days of mountain biking, is intended to raise funds for the Duchenne Parent Project foundation. The initiator organizes the fundraising ride to support this important goal and to engage in it for the long term. | Personal → Personal Stories 1027 | duchenne 21 marathon 192 foundation 6678 | |
| kevinsheroes.nl | Kevin's Heroes | Kevin Florin, 14 years old, has Duchenne's disease and urgently needs a wheelchair bus to improve his mobility and support research. The website describes Kevin’s situation, his family, and the need for funds for medication and the wheelchair bus. It is a crowdfunding campaign. The site includes news, photos, a guest book, and information about Duchenne’s disease, sponsors, and how people can help. | Fundraising → Crowdfunding 22 | wheelchair bus 46 disease 285 fundraising 322 sponsor 1159 family 6462 | Kaag en Braassem → Leimuiden 202 |
| 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. | Social Organization → Patient Organizations 259 | compliment 15 ms 55 body language 86 agenda 4374 coach 25810 | |
| stichtingroel.nl | Stichting Roel | The website offers information about metabolic disorders and the experiences of the patient, Roel, who suffered from this disorder at a young age. Stichting Roel annually donates to Stichting Energy4All – Stop Metabolic Disorders, with the goal of research and treatment of this condition. Previous campaigns, such as the sale of paintings and the Jan Linders fund campaign, have resulted in significant revenues, which are used to support the foundation's goals. | Charities → Fundraising 1005 | campaign 3428 donation 5110 foundation 6678 | |
| teamnieuwestart.nl | Team Nieuwe Start | Since 2008, Team Nieuwe Start has organized annual cycling events, under the motto ‘Trap Duchenne de Wereld Uit’ (Get Duchenne Out of the World), to raise money for research into Duchenne muscular dystrophy. The website provides information about the team, Duncans Heroes, Duchenne, and ways to sponsor the team. Team Nieuwe Start has already sponsored in 2025 and invites visitors to also sponsor. | Cycling → Cycling Clubs 522 | duchenne 21 cycle 1906 sponsorship 2686 | |
| autsource.nl | Autsource | The website addresses the topic of Autism Spectrum Disorder, highlighting the increasing numbers of late diagnoses in both men and women. Autsource offers support to individuals with autism, as well as to their family members and stakeholders, such as parents, partners, children, schools, and employers. Through coaching, counseling, and guidance, Autsource strives for greater understanding, insight, and personal growth for those with autism and their environment. | Mental & Emotional Well-Being → Autism 958 | understanding 134 counseling 741 autism 758 growth 4054 coach 25810 | Netherlands → Utrecht 48901 |
| mijnknuffelkussen.nl | Mijn Knuffelkussen | The Knuffelkussen Imperfectie® is a handcrafted cushion that provides sensory stimulation, improving sensitive perception and relaxation. It is used for reminiscence therapy, where materials from the past can be applied, and stimulates the sense of touch and different brain areas. The cushion is suitable for people with Alzheimer’s or dementia due to the ability to evoke memories and create a sense of safety and peace. | Neurology → Dementia 509 | senses 133 cushion 823 memory 1641 | |
| angelasclusterhoofdpijn.nl | Stichting OverLeven met Clusterhoofdpijn | The website provides information about the foundation and how to support it. There is an auction page where unique items are for sale, and a guest book where messages can be left. The website includes media such as radio interviews and newspaper articles about cluster headaches, and a video to illustrate the disease. | Context 161394 | auction 561 medium 1293 foundation 6678 treatment 21203 | Bunschoten → Bunschoten-Spakenburg 382 |
| emotivcoaching.nl | Emotiv.Coaching | The website focuses on supporting people with NCBI and their families, with particular attention to aspects such as finding new goals after the loss of work, coping with changes in relationships, and developing strategies for daily life. The coaching approach is geared towards providing a personal, professional and open collaboration, focusing on helping clients shape their own future. Various coaching programs are offered, including NCBI coaching, family coaching, caregiver coaching, aphasia coaching and illness coaching, as well as training sessions focused on communication with people with aphasia. | Conditions → Neurological Conditions 20 Neurology → Dementia 509 | ncbi 13 aphasia 31 future 404 caregiver 1167 family 6462 coach 25810 | |