| ushersyndroom.nl | Stichting Ushersyndroom | The Stichting Ushersyndroom is an organization dedicated to research and awareness regarding Usher syndrome. | Charities → Fundraising 1005 Disease & Treatment → Rare Diseases 229 | awareness 1735 patient 4082 foundation 6678 research 8967 | |
| meeroverfabry.nl | CHIESI Farmaceutici S.p.A. | This website aims to inform healthcare professionals about Fabry disease and provide support to patients, with the goal of improving treatment. | Disease & Treatment → Rare Diseases 229 Health → Medical Care & Services 29461 | healthcare professionals 235 symptoms 558 patient 4082 | |
| dvnexpertisecentrum.nl | Spierziekten Centrum Nederland | The DVN Expertisecentrum website provides information and support for patients and healthcare professionals dealing with thin-walled neuropathies (DVN). | Disease & Treatment → Cardiovascular Diseases 91 Disease & Treatment → Rare Diseases 229 | healthcare professionals 235 diagnosis 1490 patient 4082 research 8967 treatment 21203 | Limburg → Maastricht 6008 |
| stofwisselkracht.nl | Stichting Stofwisselkracht | The Stichting Stofwisselkracht is an organization that directs funds for research and activities related to metabolic diseases. | Research → Medical Research 384 Disease & Treatment → Rare Diseases 229 | patient 4082 partner 4272 donation 5110 research 8967 event 45199 | |
| stichtingijzersterk.nl | Stichting IJzersterk | Stichting IJzersterk is a Dutch foundation dedicated to research and support for patients and families affected by brain iron accumulation (NBIA). | Patient Services & Rights → Patient Information 158 Disease & Treatment → Rare Diseases 229 | iron 237 diagnosis 1490 patient 4082 research 8967 | |
| optimalezorg-dapperedokters.nl | Optimale Zorg – Dappere Dokters | The website of Optimale Zorg – Dappere Dokters describes a movement that advocates for a patient-centered approach to medical care, prioritizing the individual needs and circumstances of the patient. The movement strives to counter over-treatment and promote a ‘daring’ attitude among doctors. | Medical Care & Services → Patient Services & Rights 358 Disease & Treatment → Rare Diseases 229 | disease 285 doctor 1397 patient 4082 care 12338 collaboration 16036 treatment 21203 | Bloemendaal → Overveen 414 |
| stichtingziektevanpompe.nl | Stichting Ziekte van Pompe | The Stichting Ziekte van Pompe is an organization dedicated to research, support, and awareness regarding Pompe disease. | Diseases → Neurological Diseases 21 Disease & Treatment → Rare Diseases 229 | board 3438 patient 4082 donation 5110 foundation 6678 research 8967 | |
| uitlegalk.nl | StroomZ | This website provides information and materials about ALK, a disease, and aims to assist healthcare professionals and patients in understanding and managing the condition. | Medical Care & Services → Primary Care 5699 Disease & Treatment → Rare Diseases 229 | healthcare provider 474 conversation 1828 model 3546 patient 4082 | |
| expertiseconsultatie.nl | Stichting Expertiseconsultatieportaal | The Expertise Consultation Portal (ECP) is a digital infrastructure designed to facilitate expert advice and collaboration within expert networks for rare diseases. | Medical Care & Services → Digital & Telehealth 799 Disease & Treatment → Rare Diseases 229 | portal 591 consulting 3639 patient 4082 network 11123 care 12338 | |
| stichtinghuidlymfoom.nl | Stichting Huidlymfoom | The Stichting Huidlymfoom website provides information and support to patients, relatives, and professionals dealing with cutaneous lymphooma. | Disease & Treatment → Rare Diseases 229 | patient 4082 research 8967 care 12338 collaboration 16036 | |
| rownederland.nl | Stichting ROW/HHT Nederland | The Stichting ROW/HHT Nederland is a foundation dedicated to improving the quality of life for patients with the rare genetic disorder ROW/HHT and promoting scientific research. | Social Organization → Patient Organizations 259 Disease & Treatment → Rare Diseases 229 | rowing 243 patient 4082 research 8967 event 45199 | South-Holland → Leiden 7089 |
| ahus.nl | Stichting aHUS Nederland | The website of aHUS Netherlands aims to increase awareness of aHUS and improve the reimbursement for its treatment. | Charities → Fundraising 1005 Disease & Treatment → Rare Diseases 229 | medical 216 patient 4082 donation 5110 foundation 6678 treatment 21203 | |
| msvrijleven.nl | Stichting MS-Vrij Leven | The Stichting MS-Vrij Leven supports MS patients seeking stem cell transplants abroad by organizing and managing their crowdfunding campaigns. | Charities → Fundraising 1005 Neurology → Multiple Sclerosis 64 | stem cell transplant 12 anbi 120 crowdfunding 246 patient 4082 donation 5110 | |
| conradi-hunermann.nl | Cindy Verhorst | This website provides information about the Conradi-Hünermann syndrome, a rare metabolic disorder, and aims to raise awareness and connect patients. | Disease & Treatment → Rare Diseases 229 | patient 4082 | |
| 1op5.nl | Stichting 1 op 5 | The Stichting 1 op 5 organization works to improve care for patients with rare cancers. | Specialty Medicine → Cancer Care 97 Disease & Treatment → Rare Diseases 229 | cancer 631 patient 4082 donation 5110 research 8967 care 12338 | |
| leiomyosarcoom.nl | Voûte Digital | The website 'leiomyosarcoom.nl' provides reliable information about leiomyosarcoma, including symptoms, diagnosis, treatment, and experiences, aimed at patients, family members, and healthcare providers. | Diseases → Cancer 546 Disease & Treatment → Rare Diseases 229 | symptoms 558 diagnosis 1490 patient 4082 treatment 21203 | |
| fysioleunissenthijssen.nl | Fysiotherapie Leunissen Thijssen | Fysiotherapie Leunissen Thijssen is a physiotherapy practice offering quality care for various movement problems, fall prevention, sports rehabilitation, and pediatric physiotherapy. | Disease & Treatment → Rare Diseases 229 | artwork 2248 patient 4082 physiotherapy 4688 care 12338 treatment 21203 | Beekdaelen → Hulsberg 83 |
| hersentumorinformatiecentrum.nl | Brain Tumor Information Center Netherlands | The Brain Tumor Information Center Netherlands provides comprehensive information about brain tumors, symptoms, diagnosis, treatment, and support for patients, caregivers, and those with an interest in this neurological condition or cancer. | Disease & Treatment → Rare Diseases 229 | brain tumor 17 symptoms 558 diagnosis 1490 patient 4082 treatment 21203 | |
| behandelinginhetbuitenland.nl | Mercante Media | The website behandelinginhetbuitenland.nl aims to provide information and a platform for patients considering medical treatment abroad. | Research → Medical Research 384 Health → Medical Care & Services 29461 | crowdfunding 246 patient 4082 research 8967 treatment 21203 | |
| comiteweesgeneesmiddelen.nl | Committee for Orphan Medicines | The website of the Committee for Orphan Medicines describes the work of a group of companies that develops innovative medicines for rare diseases and the goal of providing patients with rapid access to these treatments. | Disease & Treatment → Rare Diseases 229 Associations & Groups → Industry Associations 548 | rare disease 12 patient 4082 | |