| inactievooralzheimer.nl | Alzheimer Netherlands | The website provides various ways for visitors to take action against dementia, including starting their own campaigns, participating in events, and donating. The site features inspirational stories of individuals participating in campaigns and events to raise money and increase awareness about dementia, such as cycling tours and painting competitions. In addition, the website provides information about Alzheimer Netherlands, donation boxes, promotional materials and frequently asked questions to inform and support visitors. | | action 384 dementia 674 inspiration 4081 donation 5110 research 8967 event 45199 | |
| myositis.nl | Myositis Netwerk Nederland | The network provides information and support to patients, referrers, and researchers. The network is researching various aspects of myositis, including the necessity of muscle biopsies, the comparison of antibodies with prednisone, and the possibility of home monitoring in children. The network strives to strengthen the visibility and recognition of myositis through collaboration between patients, doctors, and researchers, and sharing research results. | Disease & Treatment → Cardiovascular Diseases 91 | researcher 220 doctor 1397 patient 4082 network 11123 | North-Holland → Amsterdam 41253 |
| 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. | Social Organization → Patient Organizations 259 | donation 5110 newsletter 6504 research 8967 membership 10442 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. | Disease & Treatment → Neurological Disorders 100 | foundation 6678 research 8967 event 45199 | |
| toervoorals.nl | Stichting ALS Nederland | The Toer voor ALS event encourages participants to cycle, run, walk, or kitesurf kilometers and sponsor them for research into ALS. The second edition of the Toer voor ALS in 2020 took place as a ‘Home Edition’ due to the coronavirus pandemic, with over 26,000 sponsored kilometers cycled, run, walked and kitesurfed. Stichting ALS Nederland organizes the event to raise money for ALS, PSMA and PLS and provides updates on the foundation's work via a digital newsletter. | Charities → Fundraising 1005 | als 45 tour 2315 sponsorship 2686 newsletter 6504 event 45199 | |
| stichtingziektevanpompe.nl | Stichting Ziekte van Pompe | The foundation raises funds to stimulate research and improve the quality of life for patients. The foundation provides support to patients and their families and organizes events and activities to raise awareness. The foundation publishes annual reports and reports and has an ANBI status and CBF label. | Disease & Treatment → Rare Diseases 229 | board 3438 patient 4082 donation 5110 foundation 6678 research 8967 | |
| beatduchenne.nl | Beat Duchenne | The website describes Duchenne Muscular Dystrophy (DMD) as an incurable and progressive muscle disease caused by a genetic defect. Beat Duchenne informs about scientific research into a treatment for the disease and highlights the importance of financial support. The foundation organizes initiatives, such as the 4 Mile Run in Emmen, and offers opportunities to volunteer or donate. | Charities → Fundraising 1005 | duchenne 21 action 384 donation 5110 family 6462 foundation 6678 research 8967 | Drenthe → Emmen 3348 |
| 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. | Social Organization → Patient Organizations 259 | als 45 participation 1430 donation 5110 research 8967 | |
| ibmexpertisecentrum.nl | Netherlands Muscle Disease Center | The IBM Expertisecenter, managed by the Netherlands Muscle Disease Center, facilitates research into IBM, strives for optimal diagnosis, care, and treatment, and shares this expertise with university hospitals. The website offers information about the disease, treatment tips, the diagnostic value of certain antibodies, ongoing research, and a patient registration program. Patients can contact fellow sufferers via a forum and the website provides information about emergency admissions and contact details of various university medical centers. | | expertise center 29 diagnosis 1490 patient 4082 research 8967 treatment 21203 | Amsterdam → Southeast 815 |
| 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. | Social Organization → Patient Organizations 259 | healthcare professionals 235 patient 4082 research 8967 treatment 21203 | South-Holland → Rotterdam 25048 |
| myositisexpertisecentrum.nl | Spierziekten Centrum Nederland | The center offers information for patients, healthcare providers, and research on myositis. Patients can receive advice on the treatment, diagnosis, and prognosis of myositis. The center maintains a forum and provides contact information for other members, Radboudumc, Amsterdam UMC and LUMC. | | forum 1362 patient 4082 treatment 21203 | Gelderland → Nijmegen 9384 |
| mc-alzheimer.nl | Medisch Consult Alzheimer | Alzheimer's disease is a slow-progressing brain disorder that damages memory and cognitive skills, eventually impairing the ability to perform daily tasks. The disease is currently the sixth leading cause of death in the United States and a possible third cause for older adults, after heart disease and cancer. Dementia, including Alzheimer's, involves a loss of cognitive and behavioral skills, ranging from mild forms to complete dependence on others. | Neurology → Dementia 509 | alzheimer 34 cause 226 brain 481 symptoms 558 dementia 674 treatment 21203 | |
| inmemoriamvoorals.nl | Stichting ALS Nederland | The website offers the possibility to create an online collection bus to commemorate a loved one who suffered from ALS. The collected funds are allocated to scientific research into the cause and treatment of ALS, as well as measures to improve the quality of life for patients and their families. The Stichting ALS Nederland is entirely dependent on donations and does not receive government funding. | Neurological Disorders → ALS 12 | als 45 donation 5110 foundation 6678 collection 7566 research 8967 | |
| dutchcaafoundation.nl | The Dutch CAA Foundation | The Dutch CAA Foundation focuses on increasing awareness of CAA, both nationally and internationally, and on fundraising for research. The foundation has ANBI status, indicating it is a reliable charity. CAA affects the small blood vessels in the brain, leading to brain bleeds, strokes, paralysis, dementia, and ultimately death. | Social Issues & Welfare → Fundraising 17 | vessel 262 patient 4082 donation 5110 research 8967 | |
| alzheimerpreventie.nl | Alzheimer Prevention | The website describes Alzheimer’s as a heritable disease that can be prevented. It offers information on the causes, symptoms, stages, and prognosis of Alzheimer's disease. It presents a prevention program with laboratory testing and online training to reduce the risk of Alzheimer’s. | | alzheimer 34 prevention 1763 lifestyle 2918 research 8967 | |
| loesclaerhoudt.nl | Loes Claerhoudt | The website was established in 2005 with the aim of keeping visitors informed about the developments surrounding the disease ALS, with which the author is personally affected. The author has undergone several treatments in the past, including an operation with stem cells in Peking, and shares this information via a blog and articles on the website. In addition to the blog and articles, the website contains information about the author's published books, 'LOES' and 'En dan is er altijd nog de hoop', with the possibility to order a copy. | Personal → Personal Stories 1027 | als 45 column 543 article 6000 book 11396 blog 13392 | |
| allesvoorbram.nl | AlLeS for Bram | The AlLeS for Bram team was founded in 2019 after the diagnosis of ALS in Bram Emmerzaal, and organizes activities such as selling Bramburgers and participating in cycling races (Tour du ALS) to raise money. The team, consisting of family and friends from Angeren, has previously participated in the Tour du ALS, climbing Mont Ventoux and raising money for the ALS Foundation. The website offers a photo gallery with images of adventures, and invites visitors to follow via Facebook and Instagram and donate. | Cycling → Cycling Clubs 522 | als 45 photo gallery 206 donation 5110 foundation 6678 | Lingewaard → Angeren 92 |
| galerie-hermans.nl | Galerie Hermans | The site includes an interview from the Dagblad van het Noorden discussing Hermans' art and life. Hennie Hermans is a Multi-Art artist who combines traditional techniques like oil and acrylic painting, pencil drawing, and chalk with digital photography editing. Despite a 2017 ALS diagnosis impacting her fine motor skills, she continues to create digital art using her eyes and mouth, utilizing modern technology. | Visual Arts → Fine Art 322 | als 45 oil 970 drawing 1101 art 3856 | |
| helpboudewijn.nl | Help Boudewijn | The website describes Boudewijn's personal experience with MS, starting with the diagnosis in 2010 and the subsequent medication use and side effects. It provides information about the AHSCT treatment, a stem cell transplantation therapy, and the decision to stop medication in the hope of improvement. The site contains success stories, answers to questions about stem cell transplantation, and information about the importance of donations. | | multiple sclerosis 39 success story 94 medication 1164 mobility 1264 donation 5110 | |
| msstichtingdanique.nl | MS Stichting Danique | Danique is 18 years old and lives in Pijnacker. She is studying ‘healthcare individual health care’ and has already gained practical experience as a caregiver. Last year, she was diagnosed with multiple sclerosis (MS), which has made her future uncertain. Medication is the only treatment available in the Netherlands, which aims to suppress MS attacks. Danique has considered stem cell therapy (aHSCT) in Russia and has been inspired by success stories of other patients. She is collecting funds to cover the cost of the treatment. | Social Organization → Charities 2419 | stem cell therapy 10 multiple sclerosis 39 russia 46 donate 77 life 2673 care 12338 | |
| stopduchenne.nl | Stop Duchenne Foundation | The website describes Duchenne as an inherited muscle disease that almost exclusively affects boys, with early symptoms appearing quickly, often with reduced strength in the legs and later in other muscles. It states that there is currently no cure or treatment for Duchenne, and that life expectancy is low, although ongoing research is being conducted. A 'Duchenne parent project' is also presented. The website informs about various actions and events, such as the ‘Sinterklaas Cookies Campaign’ and the ‘Duchenne Heroes’ campaign, to raise donations. | | duchenne 21 disease 285 family 6462 research 8967 | |