List of rare disease organisations
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[]
- ICD coding for rare diseases
- (ICOSEP) [1]
- (RDI) [2]
- (ICORD) [3]
- [4]
- [5]
- Rare Disease Day[6]
- (APARDO) [7]
- (IRDiRC) [8]
- Orphanet[9]
- RareConnect[10]
- [11]
- Indo US Organization for Rare Diseases (IndoUSrare)
Asia[]
Europe[]
- European Organisation for Rare Diseases (EURORDIS) [19]
- (E-Rare) [20]
- (EUCERD) [21]
- [22]
- [23]
- (EPIRARE) [24]
- (WAO(R)D) [25]
- (WACRD) [26]
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[]
- ^ 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/
- ^ "Orphanet".
- ^ "RareConnect".
- ^ "Rare Disease".
- ^ http://www.ordindia.in
- ^ https://pompeindia.org/
- ^ "財團法人罕見疾病基金會".
- ^ 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/
- ^ http://www.wardiseases/[dead link]
- ^ http://www.rarecured.com/
- ^ "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. Archived from the original on January 4, 2013. Retrieved 14 February 2009.
- ^ "About Us".
- ^ "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 (November 2010). "7000 Bracelets for Hope™". Globalgenes.org. Retrieved 2013-07-10.
- ^ "Spotlight on Rare Diseases Newsletter".
- ^ "RDCA-DAP | Critical Path Institute".
- ^ 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.
Categories:
- Lists of diseases