List of rare disease organisations
This is a list of non-profit organisations working in the area of rare diseases.
International
[edit]- Care-For-Rare Foundation[1]
- ICD coding for rare diseases
- International Coalition of Organizations Supporting Endocrine Patients (ICOSEP)[2]
- Rare Diseases International (RDI)[3]
- International Conference on Rare Diseases & Orphan Drugs (ICORD)[4]
- NGO Committee for Rare Diseases[5]
- Global Commission to End the Diagnostic Odyssey for Children[6]
- Rare Disease Day[7]
- Asia Pacific Alliance of Rare Disease Organisations (APARDO)[8]
- International Rare Diseases Research Consortium (IRDiRC)[9]
- Orphanet[10]
- RareConnect[11]
- APEC LSIF Rare Disease Network[12]
- Indo US Organization for Rare Diseases (IndoUSrare)[13]
- RareGen Youth Network (RareGen)[14]
Africa
[edit]- Foundation for Neuromuscular Support Nigeria[15]
- Rare Diseases Ghana[16]
- Hemophilia Foundation of Nigeria[17]
- Rare Disease Nigeria[18]
- Cardiac Community[19]
Asia
[edit]- Organization for Rare Diseases India[20]
- Pompe Foundation India[21]
- Taiwan Foundation for Rare Disorders (TFRD)[22]
- Hong Kong Alliance for Rare Diseases (HKARD)[23]
- Illness Challenge Foundation (ICF)[24]
- China-Dolls Center for Rare Disorders (CCRD)[25]
- Indian Organisation For Rare Diseases[26]
Europe
[edit]- European Organisation for Rare Diseases (EURORDIS)[27]
- ERA-Net for Research Programmes on Rare Diseases (E-Rare)[28]
- European Union Committee of Experts on Rare Diseases (EUCERD)[29]
- INNOVCare[30]
- RD-Connect[31] (defunct)
- European Platform for Rare Disease Registries (EPIRARE)[32]
- The World Association of Orphan Diseases (WAO(R)D)[33]
- The World Association of Cured Rare Diseases (WACRD)[34]
Germany
[edit]United Kingdom
[edit]- Niemann-Pick UK[35]
- Rare Disease UK[36]
- Rare Autoinflammatory Conditions Community - UK[37]
- The Aarskog Foundation[38]
United States
[edit]- The National Organization for Rare Disorders (NORD) was established in 1983 by individuals and families with rare diseases.[39][40]
- EveryLife Foundation for Rare Diseases was founded in 2009 and is a nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.[41]
- Genetic Alliance, established in 1986, lists information and support groups for approximately 1200 rare diseases.[42]
- Global Genes is a US-based, global advocacy organization.[43]
- Office of Rare Diseases Research (ORDR)[44]
- Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)[45]
- Rare Kids Network[46]
- Rare & Undiagnosed Network (RUN)[47]
- Swan USA[48]
- Undiagnosed Diseases Network (UDN)[49]
- The Pediatric Foundation for Rare Diseases
Canada
[edit]- The Canadian Organization for Rare Disorders (CORD) is the national network of organizations who represent people affected by rare disorders within Canada. CORD's intention is to provide a strong common voice advocating for a healthcare system and health policy for those with rare disorders.[50]
References
[edit]- ^ a b "Care-for-Rare Foundation für Kinder mit seltenen Erkrankungen – Helfen Sie uns, den Waisen der Medizin zu helfen!". Care-for-Rare Foundation (in German). Retrieved 2024-03-22.
- ^ "International Coalition of Organizations Supporting Endocrine Patients (ICOSEP)". International Coalition of Organizations Supporting Endocrine Patients (ICOSEP). Retrieved 2024-03-22.
- ^ "Rare Diseases International". Rare Diseases International. Retrieved 7 September 2022.
- ^ "ICORD | International Collaboration on Rare Diseases and Orphan Drugs". ICORD. July 2, 2019.
- ^ "NGO Committee for Rare Diseases". NGO Committee for Rare Diseases. Retrieved 2024-03-22.
- ^ "Global Commission on Rare Disease". Global Rare Disease Commission. Archived from the original on 2022-11-09. Retrieved 2024-03-22.
- ^ "Rare Disease Day 2024". Rare Disease Day 2024. Retrieved 2024-03-22.
- ^ "Rare Disease | Apardo | Singapore". APARDO. Retrieved 2024-03-22.
- ^ "IRDiRC – International Rare Diseases Research Consortium". International Rare Diseases Research Consortium. Retrieved 2024-03-22.
- ^ "Orphanet". Orphanet. Retrieved 2024-03-22.
- ^ "RareConnect". RareConnect. Retrieved 2024-03-22.
- ^ "Rare Disease". APEC.
- ^ "Organization for Rare Diseases". IndoUSRare. Retrieved 2024-03-22.
- ^ "RareGen". RareGen. Retrieved 2024-11-08.
- ^ "Foundation for Neuromuscular Support Nigeria". nigeria24.me. Nigeria 24. Retrieved 7 September 2022.
- ^ "Rare Disease Ghana Initiative". NORD (National Organization for Rare Disorders). 11 August 2022. Retrieved 7 September 2022.
- ^ "Home page". www.haemocare.org.ng. Haemophilia Foundation of Nigeria. Retrieved 7 September 2022.
- ^ "Rare Disease Day Nigeria 2022". Retrieved 7 September 2022.
Hosted by Rare Disease Nigeria, ...
- ^ "Home". Cardiac Community. Retrieved 7 September 2022.
- ^ "Organization For Rare Diseases India | ORDI". Organization For Rare Diseases India. Retrieved 2024-03-22.
- ^ "Pompe foundation | Indian Pompe Disease helpline". Pompe Foundation. Retrieved 2024-03-22.
- ^ "TFRD Home". Taiwan Foundation for Rare Disorders. Retrieved 2024-03-22.
- ^ "RARE DISEASE HONG KONG". RARE DISEASE HONG KONG. Retrieved 2024-03-22.
- ^ "病痛挑战基金会". China Illness Challenge Foundation. Retrieved 2024-03-22.
- ^ "瓷娃娃罕见病关爱中心 - 成骨不全症｜脆骨病｜罕见骨病｜残障". China-Dolls Center for Rare Disorders. Retrieved 2024-03-22.
- ^ "IORD - Indian Organization for Rare Diseases". Indian Organization for Rare Diseases. Retrieved 2024-03-22.
- ^ "Home". EURORDIS. Retrieved 2024-03-22.
- ^ "ERA-Net for research programmes on rare diseases | E-RARE Project | Fact Sheet | FP6". CORDIS | European Commission. Retrieved 2024-03-22.
- ^ "EUCERD". Archived from the original on 2020-10-18. Retrieved 2020-05-20.
- ^ "INNOVCare". INNOVCare. Retrieved 2024-03-22.
- ^ "RD-Connect – RD-Connect website". RD-Connect. Retrieved 2024-03-22.
- ^ "Epirare.eu - Europäische Plattform für Gesundheit & Genetik". Epirare.eu.
- ^ http://www.wardiseases/ [dead link]
- ^ "The World Association of Cured Rare Diseases - WACRD". World Association of Cured Rare Diseases. Archived from the original on 2019-07-03. Retrieved 2024-03-22.
- ^ "Home - NPUK". www.npuk.org. Retrieved 7 September 2022.
- ^ "Home - Rare Disease UK". www.raredisease.org.uk. Retrieved 7 September 2022.
- ^ "Rare Autoinflammatory Conditions Community – UK". raccuk.com. Retrieved 7 September 2022.
- ^ "The Aarskog Foundation - Home". www.aarskogsyndromefoundation.co.uk. Retrieved 7 September 2022.
- ^ "About NORD". National Organization for Rare Disorders. 30 July 2008. Archived from the original on 17 February 2009. Retrieved 14 February 2009.
- ^ "The National Organization for Rare Disorders (NORD) Names Peter Saltonstall New President". Reuters. 5 May 2008. Archived from the original on January 4, 2013. Retrieved 14 February 2009.
- ^ "About Us". EveryLife Foundation for Rare Diseases. Retrieved 2024-03-22.
- ^ "What is a Genetic Disease". Genetic Alliance. Archived from the original on 2007-07-11. Retrieved 2012-09-24.
- ^ "Homepage - Global Genes". Global Genes. Retrieved 2024-03-22.
- ^ "Home - Genetic and Rare Diseases Information Center". Genetic and Rare Diseases Information Center. Retrieved 2024-03-22.
- ^ "RDCA-DAP | Critical Path Institute". Critical Path Institute: Rare Disease Cures Accelerator-Data and Analytics Platform. Retrieved 2024-03-22.
- ^ "Rare Kids Network". Rare Kids Network. Archived from the original on 2020-08-03. Retrieved 2024-03-22.
- ^ "Rare & Undiagnosed Network". Rare & Undiagnosed Network.
- ^ http://swanusa.org/
- ^ "Undiagnosed Diseases Network". UDN. Retrieved 2024-03-22.
- ^ "Canadian Organization for Rare Disorders". Raredisorders.ca. Retrieved 2012-09-24.