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)

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
• European Platform for Rare Disease Registries (EPIRARE)
• The World Association of Orphan Diseases (WAO(R)D)
• The World Association of Cured Rare Diseases (WACRD)

United Kingdom

• 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 Founded in 2009 by Dr. Emil Kakkis The EveryLife Foundation for Rare Diseases is a 501(c)(3) 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.
• The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. (R.A.R.E stands for Rare disease, Advocacy, Research and Education). Global Genes promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations. Global Genes uses a simple concept of "genes and jeans" to broadly promote the needs of the rare and genetic disease community. The organization has launched a number of innovative rare and genetic disease awareness campaigns including, Hope, It's In Our Genes™, Wear That You Care™, 7,000 Bracelets for Hope™ to represent the 7,000 different rare diseases and Unite 1 Million For RARE™ disease. Other nonprofit organizations in the United States include the Rare Undiagnosed Network (RUN) and the Undiagnosed Diseases Network.
• The 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.