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
- European Organisation for Rare Diseases (EURORDIS) [19]
- ERA-Net for Research Programmes on Rare Diseases (E-Rare) [20]
- European Union Committee of Experts on Rare Diseases (EUCERD) [21]
- INNOVCare[22]
- RD-Connect[23]
- European Platform for Rare Disease Registries (EPIRARE) [24]
UK
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
- ^ http://icosep.org
- ^ http://www.rarediseasesinternational.org Retrieved 22 August 2017.
- ^ http://icord.es/
- ^ https://www.ngocommitteerarediseases.org/
- ^ https://www.globalrarediseasecommission.com/
- ^ https://www.rarediseaseday.org/
- ^ https://www.apardo.org/
- ^ https://irdirc.org/
- ^ https://www.orpha.net/consor/cgi-bin/index.php
- ^ https://www.rareconnect.org/en
- ^ https://www.apec.org/rarediseases
- ^ http://www.ordindia.in
- ^ https://pompeindia.org/
- ^ http://www.tfrd.org.tw/tfrd/home
- ^ https://www.hkard.org/
- ^ http://www.chinaicf.org/
- ^ http://www.chinadolls.org.cn/
- ^ "IORD - Indian Organization for Rare Diseases | Just another WordPress site". Retrieved 2020-07-14.
- ^ https://www.eurordis.org/
- ^ http://www.erare.eu/
- ^ http://www.eucerd.eu/
- ^ https://innovcare.eu/
- ^ https://rd-connect.eu/
- ^ http://www.epirare.eu/
- ^ "About NORD". National Organization for Rare Disorders. 30 July 2008. Archived from the original on 17 February 2009. Retrieved 14 February 2009.
- ^ "The National Organization for Rare Disorders (NORD) Names Peter Saltonstall New President". Reuters. 5 May 2008. Retrieved 14 February 2009.
- ^ "What is a Genetic Disease". Genetic Alliance. Archived from the original on 2007-07-11. Retrieved 2012-09-24.
- ^ "Leadership". Globalgenes.org. Retrieved 2013-07-10.
- ^ "Genes Ribbon™". Globalgenes.org. 2013-02-28. Retrieved 2013-07-10.
- ^ "Patient Stories". Globalgenes.org. Retrieved 2013-07-10.
- ^ "Wear That You Care™". Globalgenes.org. 2013-02-28. Archived from the original on 2017-01-27. Retrieved 2013-07-10.
- ^ 10 July 2013 By Ilana Jacqueline Leave a Comment. "7000 Bracelets for Hope™". Globalgenes.org. Retrieved 2013-07-10.
{{cite web}}: CS1 maint: numeric names: authors list (link) - ^ https://www.rarediseasesnetwork.org/spotlight/spring2011/ORDR
- ^ https://c-path.org/programs/rdca-dap/
- ^ https://www.rarekidsnetwork.org/
- ^ https://rareundiagnosed.org/
- ^ http://swanusa.org/
- ^ https://undiagnosed.hms.harvard.edu/
- ^ "Canadian Organization for Rare Disorders". Raredisorders.ca. Retrieved 2012-09-24.