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 [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

[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]

## Belgium

[edit]

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

## Germany

[edit]

* Care-For-Rare Foundation [de][1]

## United Kingdom

[edit]

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

## United States

[edit]

* 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

[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.[53]

## References

[edit]

1. ^ 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.
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.