List of rare disease organisations

This is a list of non-profit organisations working in the area of rare diseases.

International

• Care-For-Rare Foundation  [ de ] ^[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

• Foundation for Neuromuscular Support Nigeria ^[15]
• Rare Diseases Ghana ^[16]
• Hemophilia Foundation of Nigeria ^[17]
• Rare Disease Nigeria ^[18]
• Cardiac Community ^[19]

Asia

• 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

• 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]

Belgium

• Sciensano: Rare diseases ^[35]
• Rare Disease Day Belgium ^[36]
• Rare Diseases Belgium ^[37]

Germany

• Care-For-Rare Foundation  [ de ] ^[1]

United Kingdom

• Niemann-Pick UK ^[38]
• Rare Disease UK ^[39]
• Rare Autoinflammatory Conditions Community - UK ^[40]
• The Aarskog Foundation ^[41]

United States

• The National Organization for Rare Disorders (NORD) was established in 1983 by individuals and families with rare diseases. ^{[42] [43]}
• 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. ^[44]
• Genetic Alliance, established in 1986, lists information and support groups for approximately 1200 rare diseases. ^[45]
• Global Genes is a US-based, global advocacy organization. ^[46]
• Office of Rare Diseases Research (ORDR) ^[47]
• Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) ^[48]
• Rare Kids Network ^[49]
• Rare & Undiagnosed Network (RUN) ^[50]
• Swan USA ^[51]
• Undiagnosed Diseases Network (UDN) ^[52]
• The Pediatric Foundation for Rare Diseases

Canada

• 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. ^[53]

References

1. "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.
2. "International Coalition of Organizations Supporting Endocrine Patients (ICOSEP)". International Coalition of Organizations Supporting Endocrine Patients (ICOSEP). Retrieved 2024-03-22.
3. "Rare Diseases International". Rare Diseases International. Retrieved 7 September 2022.
4. "ICORD | International Collaboration on Rare Diseases and Orphan Drugs". ICORD. July 2, 2019.
5. "NGO Committee for Rare Diseases". NGO Committee for Rare Diseases. Retrieved 2024-03-22.
6. "Global Commission on Rare Disease". Global Rare Disease Commission. Archived from the original on 2022-11-09. Retrieved 2024-03-22.
7. "Rare Disease Day 2024". Rare Disease Day 2024. Retrieved 2024-03-22.
8. "Rare Disease | Apardo | Singapore". APARDO. Retrieved 2024-03-22.
9. "IRDiRC – International Rare Diseases Research Consortium". International Rare Diseases Research Consortium. Retrieved 2024-03-22.
10. "Orphanet". Orphanet . Retrieved 2024-03-22.
11. "RareConnect". RareConnect . Retrieved 2024-03-22.
12. "Rare Disease". APEC .
13. "Organization for Rare Diseases". IndoUSRare. Retrieved 2024-03-22.
14. "RareGen". RareGen. Retrieved 2024-11-08.
15. "Foundation for Neuromuscular Support Nigeria". nigeria24.me. Nigeria 24. Retrieved 7 September 2022.
16. "Rare Disease Ghana Initiative". NORD (National Organization for Rare Disorders). 11 August 2022. Retrieved 7 September 2022.
17. "Home page". www.haemocare.org.ng. Haemophilia Foundation of Nigeria. Retrieved 7 September 2022.
18. "Rare Disease Day Nigeria 2022" . Retrieved 7 September 2022. Hosted by Rare Disease Nigeria, ...
19. "Home". Cardiac Community. Retrieved 7 September 2022.
20. "Organization For Rare Diseases India | ORDI". Organization For Rare Diseases India. Retrieved 2024-03-22.
21. "Pompe foundation | Indian Pompe Disease helpline". Pompe Foundation. Retrieved 2024-03-22.
22. "TFRD Home". Taiwan Foundation for Rare Disorders. Retrieved 2024-03-22.
23. "RARE DISEASE HONG KONG". RARE DISEASE HONG KONG. Retrieved 2024-03-22.
24. "病痛挑战基金会". China Illness Challenge Foundation. Retrieved 2024-03-22.
25. "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.
26. "IORD - Indian Organization for Rare Diseases". Indian Organization for Rare Diseases. Retrieved 2024-03-22.
27. "Home". EURORDIS. Retrieved 2024-03-22.
28. "ERA-Net for research programmes on rare diseases | E-RARE Project | Fact Sheet | FP6". CORDIS | European Commission. Retrieved 2024-03-22.
29. "EUCERD". Archived from the original on 2020-10-18. Retrieved 2020-05-20.
30. "INNOVCare". INNOVCare. Retrieved 2024-03-22.
31. "RD-Connect – RD-Connect website". RD-Connect. Retrieved 2024-03-22.
32. "Epirare.eu - Europäische Plattform für Gesundheit & Genetik". Epirare.eu.
33. http://www.wardiseases/ ^{[ dead link ‍]}
34. "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.
35. "Sciensano Rare Diseases". www.sciensano.be/en/health-topics/rare-diseases. Retrieved 19 February 2025.
36. "Rare Diseases Day Belgium". www.rarediseaseday.be. Retrieved 19 February 2025.
37. "Rare Diseases Belgium". www.radiorg.be/. Retrieved 19 February 2025.
38. "Home - NPUK". www.npuk.org. Retrieved 7 September 2022.
39. "Home - Rare Disease UK". www.raredisease.org.uk. Retrieved 7 September 2022.
40. "Rare Autoinflammatory Conditions Community – UK". raccuk.com. Retrieved 7 September 2022.
41. "The Aarskog Foundation - Home". www.aarskogsyndromefoundation.co.uk. Retrieved 7 September 2022.
42. "About NORD". National Organization for Rare Disorders. 30 July 2008. Archived from the original on 17 February 2009. Retrieved 14 February 2009.
43. "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.
44. "About Us". EveryLife Foundation for Rare Diseases. Retrieved 2024-03-22.
45. "What is a Genetic Disease". Genetic Alliance. Archived from the original on 2007-07-11. Retrieved 2012-09-24.
46. "Homepage - Global Genes". Global Genes . Retrieved 2024-03-22.
47. "Home - Genetic and Rare Diseases Information Center". Genetic and Rare Diseases Information Center . Retrieved 2024-03-22.
48. "RDCA-DAP | Critical Path Institute". Critical Path Institute: Rare Disease Cures Accelerator-Data and Analytics Platform. Retrieved 2024-03-22.
49. "Rare Kids Network". Rare Kids Network. Archived from the original on 2020-08-03. Retrieved 2024-03-22.
50. "Rare & Undiagnosed Network". Rare & Undiagnosed Network.
51. http://swanusa.org/
52. "Undiagnosed Diseases Network". UDN. Retrieved 2024-03-22.
53. "Canadian Organization for Rare Disorders". Raredisorders.ca. Retrieved 2012-09-24.