List of rare disease organisations
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This is a list of non-profit organisations working in the area of
rare disease A rare disease is any disease that affects a small percentage of the population. In some parts of the world, an orphan disease is a rare disease whose rarity means there is a lack of a market large enough to gain support and resources for discov ...
s.


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 Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The European Organisation ...
* Asia Pacific Alliance of Rare Disease Organisations (APARDO) * International Rare Diseases Research Consortium (IRDiRC) *
Orphanet Orphanet is a knowledge base dedicated to rare diseases as well as corresponding diagnosis, orphan drugs, clinical trials and expert networks The website is managed by a network of academic establishments from 40 countries, led by Inserm. It c ...
* 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 The European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, that promotes research on rare diseases and commercial development o ...
(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

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United Kingdom

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


United States

* The
National Organization for Rare Disorders The National Organization for Rare Disorders (NORD) is an American non-profit organization aiming to provide support for individuals with rare diseases by advocating and funding research, education, and networking among service providers. It wa ...
(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 The Office of Rare Diseases Research is a division of the National Center for Advancing Translational Sciences (NCATS) that oversees the Rare Diseases Clinical Research Network and Genetic and Rare Diseases Information Center. History The Offic ...
(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.{{cite web, url=http://www.raredisorders.ca , title=Canadian Organization for Rare Disorders , publisher=Raredisorders.ca , date= , accessdate=2012-09-24


References

Rare disease organisations Rare disease organizations