List of rare disease organisations

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

International

 * Care-For-Rare Foundation
 * 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)

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)

Germany

 * Care-For-Rare Foundation

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 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.
 * 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 to provide a strong common voice advocating for a healthcare system and health policy for those with rare disorders.