RDI members

A global alliance of patient-driven organisations working together to advance equity for all Persons Living with a Rare Disease.

Our members worldwide

Alianza Dominicana de asociaciones de pacientes (ADAPA)
Associate
Fenpof Chile – Federación de Enfermedades Poco Frecuentes Chile
Full
Autobrewery Syndrome Advocacy and Research
Full
Alianza Argentina de Pacientes
Associate
Federación Argentina de Enfermedades Poco Frecuentes
Full
Genetic Support Network of Victoria
Associate
Pro Rare Austria, Allianz für seltenen Erkrankungen
Full
FEDERG – Federation of European Patient groups affected by a Rare and genetic kindney Disease
Full
International Federation for Spina Bifida and Hydrocephalus
Full
Unidos pela Vida
Associate
Associacao Brasileira de Enfermedades Raras (FEBER)
Full
Canadian Organization For Rare Disorders
Full
Global Alliance of Sickle Cell Disease Organisations
Associate
International Alliance of Dermatology Patient Organizations
Associate
World Federation of Hemophilia
Full
China Alliance For Rare Diseases
Full
Chinese Organization for Rare Disorders
Full
Illness Challenge Foundation
Full
Rare Disease Hong Kong
Full
Federacion Colombiana De Enfermedades Raras
Full
Red de Enfermedades Raras de Costa Rica
Associate
Pancyprian Federation of Patients’ Associations and Friends
Associate
Thalassaemia International Federation
Full
Interessengemeinschaft Hämophiler e.V.
ASSOCIATE
Federación Ecuatoriana de Enfermedades Raras o Poco Frecuentes (FERPOF)
Full
EURORDIS – Rare Diseases Europe
Full
Georgian Foundation for Genetic and Rare Diseases
Full
Allianz Chronischer Seltener Erkrankungen e.V.
Full
Esophageal Atresia Global Support Groups
Full
Pespa (Greek Alliance for Rare Diseases)
Full
FONDATION INTERNATIONALE TIERNO ET MARIAM (FITIMA)
FULL
Indian Organization for Rare Diseases
Full
Organization For Rare Diseases India
Full
Rare Disease Foundation of Iran
Full
Coalition of Rare Diseases in Israel
Associate
Advocacy Service for Rare and Intractable Diseases
Full
Rare Diseases Lesotho Association
Full
Malaysian Rare Disorders Society
Full
National Alliance For Rare Diseases Support – Malta
Full
Federación Mexicana de Enfermedades Raras
Full
World Alliance of Pituitary Organizations
Full
International Huntington Association
Full
ALASER – Alianza de Asociaciones de enfermedades huérfanas y poco frecuentes de panamá
Associate
Federación Peruana de Enfermedades Raras
Philippine Society For Orphan Disorders
Associate
Associacao Portuguesa CDG e Outras Doencas Metabolicas
Associate
Romanian National Alliance For Rare Diseases
Full
National Organization For Rare Diseases of Serbia
Full
Asia Pacific Alliance of Rare Disease Organisations (APardo)
Full
Taxawuma Assistance Handicap
Full
Aliber-Alianza Iberoamericana de Enfermedades Raras
Full
Asociación de Familiares y Afectados por Lipodistrofias (AELIP)
Full
FEDER – Federación Española De Enfermedades Raras
Full
Arabic Organisation For Rare Diseases
Full
Rare Diseases Sweden (Riksförbundet Sällsynta Diagnoser)
Full
International Federation of Psoriasis Associations (IFPA)
Associate
Leukemia Patient Advocates Foundation (CML Advocates)
Full
Ali Kimara Rare Disease Foundation – TANZANIA
Full
International Niemann-Pick Disease Alliance
Full
International Patient Organization for Primary Immunodeficiencies
Full
International Prader-Willi Syndrome Organisation
Full
Nicolaides-Baraitser Syndrome Worldwide Foundation
Full
MCT8-AHDS Foundation Inc.
Full
Nord National Organization for Rare Disorders
Full
Latin Society of Pulmonary Hypertension (PH Latin Society)
Full
Undiagnosed Diseases Network Foundation
Full
International Pemphigus and Pemphigoid Foundation
Full
TESS Research Foundation
Full
Allo Hope Foundation
Full
International FoxP1 Foundation
Full
Skraban-Deardorff Syndrome Foundation
Full
United Porphyrias Association
Associate
Child & Youth Care, Zimbabwe
Associate
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