List of rare disease organisations
From Wikipedia, the free encyclopedia
This is a list of non-profit organisations working in the area of rare diseases.
International
- Care-For-Rare Foundation[1]
- ICD coding for rare diseases
- International Coalition of Organizations Supporting Endocrine Patients (ICOSEP)[2]
- Rare Diseases International (RDI)[3]
- International Conference on Rare Diseases & Orphan Drugs (ICORD)[4]
- NGO Committee for Rare Diseases[5]
- Global Commission to End the Diagnostic Odyssey for Children[6]
- Rare Disease Day[7]
- Asia Pacific Alliance of Rare Disease Organisations (APARDO)[8]
- International Rare Diseases Research Consortium (IRDiRC)[9]
- Orphanet[10]
- RareConnect[11]
- APEC LSIF Rare Disease Network[12]
- Indo US Organization for Rare Diseases (IndoUSrare)[13]
- RareGen Youth Network (RareGen)[14]
Africa
Asia
Europe
- European Organisation for Rare Diseases (EURORDIS)[27]
- ERA-Net for Research Programmes on Rare Diseases (E-Rare)[28]
- European Union Committee of Experts on Rare Diseases (EUCERD)[29]
- INNOVCare[30]
- RD-Connect[31] (defunct)
- European Platform for Rare Disease Registries (EPIRARE)[32]
- The World Association of Orphan Diseases (WAO(R)D)[33]
- The World Association of Cured Rare Diseases (WACRD)[34]
Belgium
Germany
- Care-For-Rare Foundation[1]
United Kingdom
- Niemann-Pick UK[38]
- Rare Disease UK[39]
- Rare Autoinflammatory Conditions Community - UK[40]
- The Aarskog Foundation[41]
United States
- The National Organization for Rare Disorders (NORD) was established in 1983 by individuals and families with rare diseases.[42][43]
- EveryLife Foundation for Rare Diseases was founded in 2009 and is a nonprofit, nonpartisan organization.[44]
- Genetic Alliance, established in 1986, lists information and support groups for approximately 1200 rare diseases.[45]
- Global Genes is a US-based, global advocacy organization.[46]
- Office of Rare Diseases Research (ORDR)[47]
- Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)[48]
- Rare Kids Network[49]
- Rare & Undiagnosed Network (RUN)[50]
- Swan USA[51]
- Undiagnosed Diseases Network (UDN)[52]
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 advocate for a healthcare system and health policy for those with rare disorders.[53]