List of rare disease organisations

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

• Care-For-Rare Foundation [de]^[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]

• Foundation for Neuromuscular Support Nigeria^[15]
• Rare Diseases Ghana^[16]
• Hemophilia Foundation of Nigeria^[17]
• Rare Disease Nigeria^[18]
• Cardiac Community^[19]

• Organization for Rare Diseases India^[20]
• Pompe Foundation India^[21]
• Taiwan Foundation for Rare Disorders (TFRD)^[22]
• Hong Kong Alliance for Rare Diseases (HKARD)^[23]
• Illness Challenge Foundation (ICF)^[24]
• China-Dolls Center for Rare Disorders (CCRD)^[25]
• Indian Organisation For Rare Diseases^[26]

• 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]

• Sciensano: Rare diseases^[35]
• Rare Disease Day Belgium^[36]
• Rare Diseases Belgium^[37]

• Care-For-Rare Foundation [de]^[1]

• Niemann-Pick UK^[38]
• Rare Disease UK^[39]
• Rare Autoinflammatory Conditions Community - UK^[40]
• The Aarskog Foundation^[41]

• 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 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.^[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]
• The Pediatric Foundation for Rare Diseases

• 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.^[53]