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

International

• Care-For-Rare-Foundation^[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)

Africa

• Foundation for Neuromuscular Support Nigeria^[13]
• Rare Diseases Ghana^[14]
• Hemophilia Foundation of Nigeria^[15]
• Rare Disease Nigeria^[16]
• Cardiac Community^[17]

Asia

• ORGANIZATION FOR RARE DISEASES INDIA^[18]
• POMPE FOUNDATION INDIA^[19]
• Taiwan Foundation for Rare Disorders (TFRD) ^[20]
• Hong Kong Alliance for Rare Diseases (HKARD) ^[21]
• Illness Challenge Foundation (ICF) ^[22]
• China-Dolls Center for Rare Disorders (CCRD) ^[23]
• Indian Organisation For Rare Diseases^[24]

Europe

• European Organisation for Rare Diseases (EURORDIS) ^[25]
• ERA-Net for Research Programmes on Rare Diseases (E-Rare) ^[26]
• European Union Committee of Experts on Rare Diseases (EUCERD) ^[27]
• INNOVCare^[28]
• RD-Connect^[29]
• European Platform for Rare Disease Registries (EPIRARE) ^[30]
• The World Association of Orphan Diseases (WAO(R)D) ^[31]
• The World Association of Cured Rare Diseases (WACRD) ^[32]

Germany

• Care-For-Rare-Foundation^[33]

United Kingdom

• Rare Disease UK^[34]
• Rare Autoinflammatory Conditions Community - UK^[35]
• The Aarskog Foundation^[36]

United States

• The National Organization for Rare Disorders (NORD) was established in 1983 by individuals and families with rare diseases.^[37][38]
• 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.^[39]
• Genetic Alliance, established in 1986, lists information and support groups for approximately 1200 rare diseases.^[40]
• 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).^[41] Global Genes promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™.^[42] 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™,^[43] Wear That You Care™,^[44] 7,000 Bracelets for Hope™^[45] 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) ^[46]
• Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) ^[47]
• Rare Kids Network^[48]
• Rare & Undiagnosed Network (RUN) ^[49]
• Swan USA^[50]
• Undiagnosed Diseases Network (UDN) ^[51]

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.^[52]

References