List of rare disease organisations

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


International
  • ICD coding for rare diseases
  • International Coalition of Organizations Supporting Endocrine Patients (ICOSEP) [1]
  • Rare Diseases International (RDI) [2]
  • International Conference on Rare Diseases & Orphan Drugs (ICORD) [3]
  • NGO Committee for Rare Diseases[4]
  • Global Commission to End the Diagnostic Odyssey for Children[5]
  • Rare Disease Day[6]
  • Asia Pacific Alliance of Rare Disease Organisations (APARDO) [7]
  • International Rare Diseases Research Consortium (IRDiRC) [8]
  • Orphanet [9]
  • RareConnect [10]
  • APEC LSIF Rare Disease Network[11]

Asia
  • ORGANIZATION FOR RARE DISEASES INDIA [12]
  • POMPE FOUNDATION INDIA [13]
  • Taiwan Foundation for Rare Disorders (TFRD) [14]
  • Hong Kong Alliance for Rare Diseases (HKARD) [15]
  • Illness Challenge Foundation (ICF) [16]
  • China-Dolls Center for Rare Disorders (CCRD) [17]
  • Indian Organisation For Rare Diseases[18]

    Europe

    UK
    • Rare Disease UK
    • The Aarskog Foundation

    United States
    • The National Organization for Rare Disorders (NORD) was established in 1983 by individuals and families with rare diseases.[25][26]
    • Genetic Alliance, established in 1986, lists information and support groups for approximately 1200 rare diseases.[27]
    • 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).[28] Global Genes promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™.[29] 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™,[30] Wear That You Care™,[31] 7,000 Bracelets for Hope™[32] 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.
    • The Office of Rare Diseases Research (ORDR) [33]
    • Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) [34]
    • Rare Kids Network[35]
    • Rare & Undiagnosed Network (RUN) [36]
    • Swan USA[37]
    • Undiagnosed Diseases Network (UDN) [38]

    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.[39]

    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. https://www.orpha.net/consor/cgi-bin/index.php
    10. https://www.rareconnect.org/en
    11. https://www.apec.org/rarediseases
    12. http://www.ordindia.in
    13. https://pompeindia.org/
    14. http://www.tfrd.org.tw/tfrd/home
    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. "About NORD". National Organization for Rare Disorders. 30 July 2008. Archived from the original on 17 February 2009. Retrieved 14 February 2009.
    26. "The National Organization for Rare Disorders (NORD) Names Peter Saltonstall New President". Reuters. 5 May 2008. Retrieved 14 February 2009.
    27. "What is a Genetic Disease". Genetic Alliance. Archived from the original on 2007-07-11. Retrieved 2012-09-24.
    28. "Leadership". Globalgenes.org. Retrieved 2013-07-10.
    29. "Genes Ribbon™". Globalgenes.org. 2013-02-28. Retrieved 2013-07-10.
    30. "Patient Stories". Globalgenes.org. Retrieved 2013-07-10.
    31. "Wear That You Care™". Globalgenes.org. 2013-02-28. Archived from the original on 2017-01-27. Retrieved 2013-07-10.
    32. 10 July 2013 By Ilana Jacqueline Leave a Comment. "7000 Bracelets for Hope™". Globalgenes.org. Retrieved 2013-07-10.
    33. https://www.rarediseasesnetwork.org/spotlight/spring2011/ORDR
    34. https://c-path.org/programs/rdca-dap/
    35. https://www.rarekidsnetwork.org/
    36. https://rareundiagnosed.org/
    37. http://swanusa.org/
    38. https://undiagnosed.hms.harvard.edu/
    39. "Canadian Organization for Rare Disorders". Raredisorders.ca. Retrieved 2012-09-24.
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