| levenmetfahr.nl | Author | The website offers an overview of the rare neurological disorder Fahr's disease, characterized by calcium deposits in the brain and various motor and cognitive problems. The author emphasizes the scarcity of available information about the disease, as there are few online resources and only one specific patient association in the Netherlands. There is hope for a future study by UMC Utrecht into the disease and possible medication, which is a promising development. | Disease & Treatment → Rare Diseases 229 | disease 285 brain 481 symptoms 558 study 720 | |
| tjallinghroordastichting.nl | De Tjallingh Roorda Stichting | The foundation was established in 2000 and received a donation of €1000 from Amsterdam Grapes. The foundation’s objectives include promoting research and disseminating information about metabolic diseases and supporting children and their families. Furthermore, the foundation encourages exchanges in the fields of education, science, culture, and sports for young people aged 27 and younger. | Disease & Treatment → Rare Diseases 229 | exchange 253 disease 285 donation 5110 foundation 6678 research 8967 | North-Holland → Amsterdam 41253 |
| rare-nl.nl | RARE-NL | Rare diseases affect over 36 million people in Europe, and adequate treatment is often lacking. The development of innovative therapies, such as RNA technology or drug repurposing, often stalls due to complexity, small patient groups, and high costs. To overcome these obstacles, collaboration between companies, researchers, government, and society is crucial, with a focus on societal valorization. This is necessary for sustainable solutions. RARE-NL facilitates this collaboration through a knowledge base, events, and the promotion of business cases focused on innovation and affordability. | Disease & Treatment → Rare Diseases 229 | disease 285 innovation 4659 therapy 7448 research 8967 collaboration 16036 | Netherlands → Utrecht 48901 |
| sprakeloosje.nl | Nynke Duijff | The blog covers topics such as the nature of ALS, personal experiences with the illness, the daily impact on the author’s life, and updates on her health journey. Archived blog posts from 2016 to 2024 are included, including ‘Sprakeloosjes’ and status reports. The website offers topics like tips and tricks related to ALS, interviews and media attention, as well as updates on activities such as the Frysk Diktee. | Neurological Disorders → ALS 12 | als 45 blog 13392 | |
| politiekvandeaandacht.nl | Barbara Asselbergs” | Barbara Asselbergs was a social designer who researched situated design methods, focusing on the user’s work or living environment. During her treatment at the AMC, she began photographing staff and observations on the Hematology – F6 Zuid ward, aiming to initiate conversations beyond her illness. The film ‘Politics of Attention,’ made by Iris Vetter and Lex de Jong, documents Barbara’s experiences and the project’s goal: to reflect on time and attention for patients. | Arts → Film 3972 | amc 15 conversation 1828 film 3007 patient 4082 photography 9503 | |
| rickjonckheerefoundation.nl | Rick Jonckheere Foundation | Rick Jonckheere passed away unexpectedly from CVID, a rare disease, at the age of eighteen while studying drums at the Rock Academy of Fontys School of Arts and Sciences. He was a first-year drum student. The foundation was created by Rick’s parents, who noticed the need for more research into rare diseases because funding is often directed towards more well-known conditions. The foundation organizes campaigns and events to raise money for CVID research and to raise awareness of the disease, having now raised €86,759 to date. | Disease & Treatment → Rare Diseases 229 | disease 285 donation 5110 research 8967 event 45199 | Tilburg → Old South 72 |
| stichtingletje.nl | Stichting Letje | The foundation was established as a tribute to Nicolette Verweij, who fought against Anorexia Nervosa for years and wished to help others. The website provides insight into Nicolette’s experiences and the activities the foundation undertakes, such as sharing experiences and collecting donations. Further information is available on the foundation’s objectives, policy plan, financial accountability, and collaboration with partners and ambassadors. | Mental & Emotional Well-Being → Eating Disorders 199 | foundation 6678 | |
| moniquebosman.nl | moniquebosman.nl | Monique describes Parkinson’s disease as a complex illness that affects all aspects of life, from movement to thinking and seeing. Monique’s goal is to live with Parkinson’s disease and encourages visitors to donate to research into a potential cure for the disease. Monique emphasizes that she does not define herself by the disease, but strives to maintain her original identity despite the challenges. | Neurology → Parkinson’s Disease 98 | see 78 parkinson 120 adaptation 155 disease 285 living 578 | |
| levenmetleukemie.nl | N.V. | The site provides an overview of the diagnosis, treatment, and daily life with CLL, starting in 2014. It includes an agenda of events and medical treatments, including the treatment with Rituximab, Fludarabine and Cyclophosphamide, and other tests such as a bone marrow biopsy. The blog offers information on various aspects of CLL, such as side effects, risk factors (such as chromosomes 11 and 17), and peer support contact. | Diseases → Cancer 546 | leukemia 17 peer support 68 check-up 148 diagnosis 1490 treatment 21203 | |
| parkinsondekempen.nl | Stichting Parkinson de Kempen | The foundation organizes 4 to 6 meetings per year where experts provide information about the disease. During these meetings, participants can share experiences and relax in a cozy atmosphere. The meetings take place in the town hall of Reusel-De Mierden and D’n Aachterum, with free access and parking. | Neurology → Parkinson’s Disease 98 | disease 285 parking 1928 meeting 2381 coffee 3838 relaxation 3968 | North-Brabant → Reusel-De Mierden 195 |
| rinaoppad.nl | N/A | Rina died in her own bed in Warder on April 19, 2023, and maintained control over her life until the very end. The blog RinaopPad.nl documents her life, aiming to minimize the impact of her illness and focus on positive aspects. After her death, farewell ceremonies were held in the crematorium in Hoorn and at the Damhotel in Edam, where loved ones and friends remembered her. | Interior Design → Inspiration 287 | joy 84 choice 827 grief 1577 funeral 2477 life 2673 blog 13392 | Edam-Volendam → Edam 379 |
| sanmetms.nl | sanmetms.nl | Sandra, a 38-year-old mother, received a diagnosis of MS in October 2017 after years of vague complaints and pain attacks. Prior to receiving the MS diagnosis, Sandra had an active and successful life with sports, education, and her own practice. The MS diagnosis led to a sudden paralysis of her right side and loss of mobility, making her dependent on donations to regain her life. | Neurology → Multiple Sclerosis 64 | sandra 13 ms 55 hand 237 mobility 1264 pain 1919 donation 5110 | |
| narcoenik.nl | narcoenik.nl | Jesse describes his life in Vlagtwedde, Groningen, and the impact of his family history. The blog discusses his diagnosis of narcolepsy and the daily challenges associated with it. Jesse shares personal events, such as his move to the Czech Republic and an encounter with a dog attack, with readers. | Travel → International Travel 445 | netherlands 1376 move 1441 life 2673 dog 5483 blog 13392 | Westerwolde → Vlagtwedde 151 |