List of rare disease organisations

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

International

• ICD coding for rare diseases
• International Coalition of Organizations Supporting Endocrine Patients (ICOSEP)
• Rare Diseases International (RDI)
• International Conference on Rare Diseases & Orphan Drugs (ICORD)
• NGO Committee for Rare Diseases
• Global Commission to End the Diagnostic Odyssey for Children
• Rare Disease Day
• Asia Pacific Alliance of Rare Disease Organisations (APARDO)
• International Rare Diseases Research Consortium (IRDiRC)
• Orphanet
• RareConnect
• APEC LSIF Rare Disease Network
• Indo US Organization for Rare Diseases (IndoUSrare)
• RareGen Youth Network (RareGen)

Africa

• Foundation for Neuromuscular Support Nigeria
• Rare Diseases Ghana
• Hemophilia Foundation of Nigeria
• Rare Disease Nigeria
• Cardiac Community

Asia

• Organization for Rare Diseases India
• Pompe Foundation India
• Taiwan Foundation for Rare Disorders (TFRD)
• Hong Kong Alliance for Rare Diseases (HKARD)
• Illness Challenge Foundation (ICF)
• China-Dolls Center for Rare Disorders (CCRD)
• Indian Organisation For Rare Diseases

Europe

• European Organisation for Rare Diseases (EURORDIS)
• ERA-Net for Research Programmes on Rare Diseases (E-Rare)
• European Union Committee of Experts on Rare Diseases (EUCERD)
• INNOVCare
• RD-Connect (defunct)
• European Platform for Rare Disease Registries (EPIRARE)
• The World Association of Orphan Diseases (WAO(R)D)
• The World Association of Cured Rare Diseases (WACRD)

Belgium

• Sciensano: Rare diseases
• Rare Disease Day Belgium
• Rare Diseases Belgium

Germany

United Kingdom

• Niemann-Pick UK
• Rare Disease UK
• Rare Autoinflammatory Conditions Community - UK
• The Aarskog Foundation

United States

• The National Organization for Rare Disorders (NORD) was established in 1983 by individuals and families with rare diseases.
• EveryLife Foundation for Rare Diseases was founded in 2009 and is a nonprofit, nonpartisan organization.
• Genetic Alliance, established in 1986, lists information and support groups for approximately 1200 rare diseases.
• Global Genes is a US-based, global advocacy organization.
• Office of Rare Diseases Research (ORDR)
• Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
• Rare Kids Network
• Rare & Undiagnosed Network (RUN)
• Swan USA
• Undiagnosed Diseases Network (UDN)

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.

References