List of rare disease organisations

From Wikipedia, the free encyclopedia

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

Africa

Foundation for Neuromuscular Support Nigeria

Rare Diseases Ghana

Hemophilia Foundation of Nigeria

Rare Disease Nigeria

Cardiac Community

International[]

Asia[]


Europe[]

UK[]

  • Rare Disease UK

United States[]

  • The National Organization for Rare Disorders (NORD) was established in 1983 by individuals and families with rare diseases.[27][28]
  • Founded in 2009 by Dr. Emil Kakkis The EveryLife Foundation for Rare Diseases is a 501(c)(3) 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.[29]
  • Genetic Alliance, established in 1986, lists information and support groups for approximately 1200 rare diseases.[30]
  • The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. (R.A.R.E stands for Rare disease, Advocacy, Research and Education).[31] Global Genes promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™.[32] What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations. Global Genes uses a simple concept of "genes and jeans" to broadly promote the needs of the rare and genetic disease community. The organization has launched a number of innovative rare and genetic disease awareness campaigns including, Hope, It's In Our Genes™,[33] Wear That You Care™,[34] 7,000 Bracelets for Hope™[35] to represent the 7,000 different rare diseases and Unite 1 Million For RARE™ disease. Other nonprofit organizations in the United States include the Rare Undiagnosed Network (RUN) and the Undiagnosed Diseases Network.
  • (ORDR) [36]
  • (RDCA-DAP) [37]
  • [38]
  • (RUN) [39]
  • [40]
  • Undiagnosed Diseases Network (UDN) [41]

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.[42]

References[]

  1. ^ http://icosep.org
  2. ^ http://www.rarediseasesinternational.org Retrieved 22 August 2017.
  3. ^ http://icord.es/
  4. ^ https://www.ngocommitteerarediseases.org/
  5. ^ https://www.globalrarediseasecommission.com/
  6. ^ https://www.rarediseaseday.org/
  7. ^ https://www.apardo.org/
  8. ^ https://irdirc.org/
  9. ^ "Orphanet".
  10. ^ "RareConnect".
  11. ^ "Rare Disease".
  12. ^ http://www.ordindia.in
  13. ^ https://pompeindia.org/
  14. ^ "財團法人罕見疾病基金會".
  15. ^ https://www.hkard.org/
  16. ^ http://www.chinaicf.org/
  17. ^ http://www.chinadolls.org.cn/
  18. ^ "IORD - Indian Organization for Rare Diseases | Just another WordPress site". Retrieved 2020-07-14.
  19. ^ https://www.eurordis.org/
  20. ^ http://www.erare.eu/
  21. ^ http://www.eucerd.eu/
  22. ^ https://innovcare.eu/
  23. ^ https://rd-connect.eu/
  24. ^ http://www.epirare.eu/
  25. ^ http://www.wardiseases/[dead link]
  26. ^ http://www.rarecured.com/
  27. ^ "About NORD". National Organization for Rare Disorders. 30 July 2008. Archived from the original on 17 February 2009. Retrieved 14 February 2009.
  28. ^ "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.
  29. ^ "About Us".
  30. ^ "What is a Genetic Disease". Genetic Alliance. Archived from the original on 2007-07-11. Retrieved 2012-09-24.
  31. ^ "Leadership". Globalgenes.org. Retrieved 2013-07-10.
  32. ^ "Genes Ribbon™". Globalgenes.org. 2013-02-28. Retrieved 2013-07-10.
  33. ^ "Patient Stories". Globalgenes.org. Retrieved 2013-07-10.
  34. ^ "Wear That You Care™". Globalgenes.org. 2013-02-28. Archived from the original on 2017-01-27. Retrieved 2013-07-10.
  35. ^ 10 July 2013 By Ilana Jacqueline Leave a Comment (November 2010). "7000 Bracelets for Hope™". Globalgenes.org. Retrieved 2013-07-10.
  36. ^ "Spotlight on Rare Diseases Newsletter".
  37. ^ "RDCA-DAP | Critical Path Institute".
  38. ^ https://www.rarekidsnetwork.org/
  39. ^ https://rareundiagnosed.org/
  40. ^ http://swanusa.org/
  41. ^ https://undiagnosed.hms.harvard.edu/
  42. ^ "Canadian Organization for Rare Disorders". Raredisorders.ca. Retrieved 2012-09-24.
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