List of rare disease organisations explained

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

International

• ^[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]

Germany

• ^[1]

United Kingdom

• Niemann-Pick UK^[35]
• Rare Disease UK^[36]
• Rare Autoinflammatory Conditions Community - UK^[37]
• The Aarskog Foundation^[38]

United States

• 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

• 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

1. Web site: Care-for-Rare Foundation für Kinder mit seltenen Erkrankungen – Helfen Sie uns, den Waisen der Medizin zu helfen! . 2024-03-22 . Care-for-Rare Foundation . de.
2. Web site: International Coalition of Organizations Supporting Endocrine Patients (ICOSEP) . 2024-03-22 . International Coalition of Organizations Supporting Endocrine Patients (ICOSEP).
3. Web site: Rare Diseases International . 7 September 2022 . Rare Diseases International.
4. Web site: ICORD | International Collaboration on Rare Diseases and Orphan Drugs. July 2, 2019. ICORD.
5. Web site: NGO Committee for Rare Diseases . 2024-03-22 . NGO Committee for Rare Diseases.
6. Web site: Global Commission on Rare Disease . dead . https://web.archive.org/web/20221109033659/https://www.globalrarediseasecommission.com/ . 2022-11-09 . 2024-03-22 . Global Rare Disease Commission.
7. Web site: Rare Disease Day 2024 . 2024-03-22 . Rare Disease Day 2024.
8. Web site: Rare Disease | Apardo | Singapore . 2024-03-22 . APARDO.
9. Web site: IRDiRC – International Rare Diseases Research Consortium . 2024-03-22 . International Rare Diseases Research Consortium.
10. Web site: Orphanet . 2024-03-22 . Orphanet.
11. Web site: RareConnect . 2024-03-22 . RareConnect.
12. Web site: Rare Disease . APEC.
13. Web site: Organization for Rare Diseases . 2024-03-22 . IndoUSRare . en-US.
14. Web site: RareGen. 2024-11-08 . RareGen . en-US.
15. Web site: Foundation for Neuromuscular Support Nigeria . nigeria24.me . Nigeria 24 . 7 September 2022.
16. Web site: Rare Disease Ghana Initiative . NORD (National Organization for Rare Disorders) . 11 August 2022 . 7 September 2022.
17. Web site: Home page . www.haemocare.org.ng . Haemophilia Foundation of Nigeria . 7 September 2022.
18. Web site: Rare Disease Day Nigeria 2022 . 7 September 2022 . Hosted by Rare Disease Nigeria, ....
19. Web site: Home . Cardiac Community . 7 September 2022.
20. Web site: Organization For Rare Diseases India | ORDI . 2024-03-22 . Organization For Rare Diseases India.
21. Web site: Pompe foundation | Indian Pompe Disease helpline . 2024-03-22 . Pompe Foundation.
22. Web site: TFRD Home . 2024-03-22 . Taiwan Foundation for Rare Disorders.
23. Web site: RARE DISEASE HONG KONG . 2024-03-22 . RARE DISEASE HONG KONG.
24. Web site: 病痛挑战基金会 . 2024-03-22 . China Illness Challenge Foundation.
25. Web site: 瓷娃娃罕见病关爱中心 - 成骨不全症｜脆骨病｜罕见骨病｜残障 . 2024-03-22 . China-Dolls Center for Rare Disorders.
26. Web site: IORD - Indian Organization for Rare Diseases . 2024-03-22 . Indian Organization for Rare Diseases .
27. Web site: Home . 2024-03-22 . EURORDIS.
28. Web site: ERA-Net for research programmes on rare diseases E-RARE Project Fact Sheet FP6 . 2024-03-22 . CORDIS European Commission . en.
29. Web site: EUCERD . 2020-05-20 . 2020-10-18 . https://web.archive.org/web/20201018010225/http://www.eucerd.eu/ . dead .
30. Web site: INNOVCare . 2024-03-22 . INNOVCare.
31. Web site: RD-Connect – RD-Connect website . 2024-03-22 . RD-Connect.
32. Web site: Epirare.eu - Europäische Plattform für Gesundheit & Genetik. Epirare.eu.
33. http://www.wardiseases/
34. Web site: The World Association of Cured Rare Diseases - WACRD . dead . https://web.archive.org/web/20190703172107/http://rarecured.com/ . 2019-07-03 . 2024-03-22 . World Association of Cured Rare Diseases.
35. Web site: Home - NPUK . www.npuk.org . 7 September 2022.
36. Web site: Home - Rare Disease UK . www.raredisease.org.uk . 7 September 2022.
37. Web site: Rare Autoinflammatory Conditions Community – UK . raccuk.com . 7 September 2022.
38. Web site: The Aarskog Foundation - Home . www.aarskogsyndromefoundation.co.uk . 7 September 2022.
39. Web site: 14 February 2009 . About NORD . National Organization for Rare Disorders . 30 July 2008 . dead . https://web.archive.org/web/20090217225011/http://rarediseases.org/info/about.html . 17 February 2009 .
40. Web site: The National Organization for Rare Disorders (NORD) Names Peter Saltonstall New President . https://archive.today/20130104215923/http://www.reuters.com/article/pressRelease/idUS81376+05-May-2008+BW20080505. dead. January 4, 2013. . 5 May 2008 . 14 February 2009.
41. Web site: About Us . 2024-03-22 . EveryLife Foundation for Rare Diseases.
42. Web site: What is a Genetic Disease . Genetic Alliance . 2012-09-24 . dead . https://web.archive.org/web/20070711035149/http://www.geneticalliance.org/ws_display.asp?filter=diseases&char=%23&s_Diseases= . 2007-07-11 .
43. Web site: Homepage - Global Genes . 2024-03-22 . Global Genes.
44. Web site: Home - Genetic and Rare Diseases Information Center . 2024-03-22 . Genetic and Rare Diseases Information Center.
45. Web site: RDCA-DAP | Critical Path Institute . 2024-03-22 . Critical Path Institute

    Rare Disease Cures Accelerator-Data and Analytics Platform

    .
46. Web site: Rare Kids Network . dead . https://web.archive.org/web/20200803141238/https://www.rarekidsnetwork.org/ . 2020-08-03 . 2024-03-22 . Rare Kids Network.
47. Web site: Rare & Undiagnosed Network. Rare & Undiagnosed Network.
48. http://swanusa.org/
49. Web site: Undiagnosed Diseases Network . 2024-03-22 . UDN.
50. Web site: Canadian Organization for Rare Disorders . Raredisorders.ca . 2012-09-24.