List of rare disease organisations

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

International

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Africa

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Asia

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Europe

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Germany

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United Kingdom

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United States

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Canada

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  • 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.[49]

References

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  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. ^ "Foundation for Neuromuscular Support Nigeria". nigeria24.me. Nigeria 24. Retrieved 7 September 2022.
  15. ^ "Rare Disease Ghana Initiative". NORD (National Organization for Rare Disorders). 11 August 2022. Retrieved 7 September 2022.
  16. ^ "Home page". www.haemocare.org.ng. Haemophilia Foundation of Nigeria. Retrieved 7 September 2022.
  17. ^ "Rare Disease Day Nigeria 2022". Retrieved 7 September 2022. Hosted by Rare Disease Nigeria, ...
  18. ^ "Home". Cardiac Community. Retrieved 7 September 2022.
  19. ^ "Organization For Rare Diseases India | ORDI". Organization For Rare Diseases India. Retrieved 2024-03-22.
  20. ^ "Pompe foundation | Indian Pompe Disease helpline". Pompe Foundation. Retrieved 2024-03-22.
  21. ^ "TFRD Home". Taiwan Foundation for Rare Disorders. Retrieved 2024-03-22.
  22. ^ "RARE DISEASE HONG KONG". RARE DISEASE HONG KONG. Retrieved 2024-03-22.
  23. ^ "病痛挑战基金会". China Illness Challenge Foundation. Retrieved 2024-03-22.
  24. ^ "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.
  25. ^ "IORD - Indian Organization for Rare Diseases". Indian Organization for Rare Diseases. Retrieved 2024-03-22.
  26. ^ "Home". EURORDIS. Retrieved 2024-03-22.
  27. ^ "ERA-Net for research programmes on rare diseases | E-RARE Project | Fact Sheet | FP6". CORDIS | European Commission. Retrieved 2024-03-22.
  28. ^ "EUCERD". Archived from the original on 2020-10-18. Retrieved 2020-05-20.
  29. ^ "INNOVCare". INNOVCare. Retrieved 2024-03-22.
  30. ^ "RD-Connect – RD-Connect website". RD-Connect. Retrieved 2024-03-22.
  31. ^ "Epirare.eu - Europäische Plattform für Gesundheit & Genetik". Epirare.eu.
  32. ^ http://www.wardiseases/ [dead link]
  33. ^ "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.
  34. ^ "Home - NPUK". www.npuk.org. Retrieved 7 September 2022.
  35. ^ "Home - Rare Disease UK". www.raredisease.org.uk. Retrieved 7 September 2022.
  36. ^ "Rare Autoinflammatory Conditions Community – UK". raccuk.com. Retrieved 7 September 2022.
  37. ^ "The Aarskog Foundation - Home". www.aarskogsyndromefoundation.co.uk. Retrieved 7 September 2022.
  38. ^ "About NORD". National Organization for Rare Disorders. 30 July 2008. Archived from the original on 17 February 2009. Retrieved 14 February 2009.
  39. ^ "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.
  40. ^ "About Us". EveryLife Foundation for Rare Diseases. Retrieved 2024-03-22.
  41. ^ "What is a Genetic Disease". Genetic Alliance. Archived from the original on 2007-07-11. Retrieved 2012-09-24.
  42. ^ "Homepage - Global Genes". Global Genes. Retrieved 2024-03-22.
  43. ^ "Home - Genetic and Rare Diseases Information Center". Genetic and Rare Diseases Information Center. Retrieved 2024-03-22.
  44. ^ "RDCA-DAP | Critical Path Institute". Critical Path Institute: Rare Disease Cures Accelerator-Data and Analytics Platform. Retrieved 2024-03-22.
  45. ^ "Rare Kids Network". Rare Kids Network. Archived from the original on 2020-08-03. Retrieved 2024-03-22.
  46. ^ "Rare & Undiagnosed Network". Rare & Undiagnosed Network.
  47. ^ http://swanusa.org/
  48. ^ "Undiagnosed Diseases Network". UDN. Retrieved 2024-03-22.
  49. ^ "Canadian Organization for Rare Disorders". Raredisorders.ca. Retrieved 2012-09-24.