RDI members

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

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Our members worldwide

Global Albinism Alliance
Full
www.albinismalliance.org
Unidos pela Vida
Full
https://unidospelavida.org.br/
Undiagnosed Diseases Network Foundation
Full
https://udnf.org/
Interessengemeinschaft Hämophiler e.V.
Associate
https://www.igh.info/
TESS Research Foundation
Full
https://www.tessresearch.org/
Federación Ecuatoriana de Enfermedades Raras o Poco Frecuentes (FERPOF)
Full
https://www.facebook.com/Ferpofecuador/
Red de Enfermedades Raras de Costa Rica
Associate
https://www.facebook.com/RedEnfermedadesRarasCostaRica
Federación Peruana de Enfermedades Raras
FULL
https://feperperu.org/
Allo Hope Foundation
Full
https://allohopefoundation.org/
International FoxP1 Foundation
Full
https://www.foxp1.org/
ALASER – Alianza de Asociaciones de enfermedades huérfanas y poco frecuentes de panamá
Associate
https://www.linkedin.com/in/alaser-panamá-583489294/
Rare Diseases Greece
Full
https://rarediseasesgreece.com/
Alianza Dominicana de asociaciones de pacientes (ADAPA)
Associate
https://adapa.org.do/
Fenpof Chile – Federación de Enfermedades Poco Frecuentes Chile
Full
https://www.facebook.com/FenpofChile/
Cutaneous Lymphoma Foundation
Full
https://www.clfoundation.org/
Krishnan Family Foundation
Full
https://krishnanfamilyfoundation.org/
Autobrewery Syndrome Advocacy and Research
Full
https://www.autobrewery.org/
RareGen
Associate
https://raregen9.wordpress.com/
Adcum Peru
Full
https://adcumperu.wixsite.com/adcumperu
Frontiers for Hemophilia and Bleeding Disorders Sierra Leone (FHBD)
Associate
https://www.facebook.com/fhbdsl#
Psoriasis Philippines
Full
https://www.psorphil.org/
NAMIBIA ALLIANCE FOR RARE DISEASES
Associate
http://www.rarediseasesnamibia.org/
LMNA CARDIAC DISEASES NETWORK
Full
https://www.lmnacardiac.org/
RARE DISEASES CZECH REPUBLIC
Full
http://www.vzacna-onemocneni.cz/
SCN2A Australia
Full
https://scn2aaustralia.org/
Georgian Alliance for Rare Disease
Associate
Panhellenic Heart Disease Association
Associate
http://kardiopatheia.sitemodify.com/
Maternal Alloimmunization Foundation
Full
https://www.alloimmunization.org/
Dimus Chile – Asociación Distrofia Muscular CHILE
Full
https://dimuschile.cl/
HAE NEPAL
Associate
https://haenepal.haei.org/
FUNCOLEHF – FUNDACIÓN COLOMBIANA PARA ENFERMEDADES HUÉRFANAS
Full
https://enfermedadeshuerfanas.org.co/web/
Foundation for leukemia patients
Network Affiliate
https://fundacja.hematologiczna.org/
Center for Ichthyosis Related Members India
Full
https://cirmindia.org/
Atrofia Multisistémica España
Associate
https://xn--amsespaa-j3a.org/
MVA Society
Associate
https://mvasociety.org/
FUPIER – Fundación Uruguaya para la Investigación de las Enfermedades Raras
Full
http://fupier.org/
Fundación Taiyari
Associate
https://www.fundaciontaiyari.org/
ALD Hope
Full
https://www.aldhope.org/
Alianza Argentina de Pacientes
Associate
http://alianzapacientes.org/
Federación Argentina de Enfermedades Poco Frecuentes
Full
http://fadepof.org.ar/
Genetic Alliance Australia
Full
http://www.geneticalliance.org.au
Genetic Support Network of Victoria
Associate
https://www.gsnv.org.au/
Rare Voices Australia
Full
http://www.rarevoices.org.au
Debra International
Full
http://www.debra-international.org
Pro Rare Austria, Allianz für seltenen Erkrankungen
Full
http://www.prorare-austria.org
Fabry International Network
Full
http://www.fabrynetwork.org/
FEDERG: Federation of European Patient Associatons affected by Rare & Genetic Kidney Diseases
Full
http://federg.org
International Federation for Spina Bifida and Hydrocephalus
Full
http://www.ifglobal.org
Fragile X International
Full
https://fraxi.org/default.asp
Botswana Organization For Rare Diseases
Associate
https://www.facebook.com/RareConditionsBots.1/
Associacao Brasileira de Enfermedades Raras (FEBER)
Full
http://feberraras.wixsite.com/feber-raras
Instituto Vidas Raras
Full
http://www.vidasraras.org.br
Casa Hunter
Full
http://casahunter.org.br
Retina International
Full
http://www.retina-international.org
Canadian Organization For Rare Disorders
Full
http://www.raredisorders.ca
Global Alliance of Sickle Cell Disease Organisations
Associate
https://www.globalscd.org/
International Alliance of Dermatology Patient Organizations
Associate
https://globalskin.org/
World Federation of Hemophilia
Full
http://www.wfh.org/
China Alliance For Rare Diseases
Full
https://www.chard.org.cn/
Chinese Organization for Rare Disorders
Full
http://www.cord.org.cn/
Illness Challenge Foundation
Full
http://www.chinaicf.org/
Rare Disease Hong Kong
Full
http://www.hkard.org
Federacion Colombiana De Enfermedades Raras
Full
http://www.fecoer.org
ERCAL
Full
http://www.ercalgroup.org
Rare Diseases Croatia
Full
https://rijetke-bolesti.com/
Cyprus Alliance For Rare Disorders
Full
http://raredisorderscyprus.com/
Pancyprian Federation of Patients’ Associations and Friends
Associate
http://cypatient.org/
Thalassaemia International Federation
Full
http://www.thalassaemia.org.cy
Alliance Maladies Rares
Full
http://www.alliance-maladies-rares.org
Association Anna
Associate
http://www.anna-asso.fr/
Cutis Laxa Internationale
Full
http://www.cutislaxa.org
EURORDIS – Rare Diseases Europe
Full
http://www.eurordis.org
Georgian Foundation for Genetic and Rare Diseases
Full
Allianz Chronischer Seltener Erkrankungen e.V.
Full
http://www.achse-online.de
Esophageal Atresia Global Support Groups
Full
http://www.we-are-eat.org
Rare Diseases Ghana Initiative
Full
https://www.rarediseaseghana.org/
Pespa (Greek Alliance for Rare Diseases)
Full
http://www.pespa.gr
FONDATION INTERNATIONALE TIERNO ET MARIAM (FITIMA)
FULL
https://fitima.org/
Indian Organization for Rare Diseases
Full
https://www.rarediseases.in/
Organization For Rare Diseases India
Full
https://ordindia.in/
Rare Disease Foundation of Iran
Full
http://radoir.org/fa/
Coalition of Rare Diseases in Israel
Associate
Association Aux Pas du Coeur
Full
https://auxpasducoeur.life/
Advocacy Service for Rare and Intractable Diseases
Full
http://asrid.org/en
Japan Patient Association
Full
http://www.nanbyo.jp
Rare Disorders Kenya
Associate
http://rarediseasekenya.org/
Rare Diseases Lesotho Association
Full
https://www.facebook.com/RDLAngo/
Malaysian Rare Disorders Society
Full
http://www.mrds.org.my
National Alliance For Rare Diseases Support – Malta
Full
http://www.rarediseasesmalta.com
Federación Mexicana de Enfermedades Raras
Full
http://www.femexer.org
CMTC-OVM
Full
http://www.cmtc.nl
Naevus Global
Full
http://www.naevusglobal.org
Worldwide Adrenal and Pituitary Organizations (WAPO)
Full
http://www.wapo.org
World Duchenne Organization
Full
http://worldduchenne.org
Rare Disorders NZ
Full
http://www.nzord.org.nz
International Huntington Association
Full
https://huntington-disease.org
Hypopara Norge
Full
http://www.hypopara.no
Rare Diseases Society Nepal
Full
https://rarediseasenepal.org/
Esperantra
Full
http://www.esperantra.org
Philippine Society For Orphan Disorders
Associate
http://www.psod.org.ph
Associacao Portuguesa CDG e Outras Doencas Metabolicas
Associate
http://www.apcdg.com
Romanian National Alliance For Rare Diseases
Full
http://bolirareromania.ro
Russian Patient Association
Full
http://www.patients.ru/en
Centre Alliance
Full
https://centre-alliance.rw/
National Organization For Rare Diseases of Serbia
Full
http://www.norbs.rs
Asia Pacific Alliance of Rare Disease Organisations (APardo)
Full
https://www.apardo.org/
Taxawuma Assistance Handicap
Full
www.taxawuma.org
Rare Diseases South Africa
Full
http://www.rarediseases.co.za
Aliber-Alianza Iberoamericana de Enfermedades Raras
Full
https://aliber.org/web/en/
Asociación de Familiares y Afectados por Lipodistrofias (AELIP)
Full
http://www.aelip.org
FEDER – Federación Española De Enfermedades Raras
Full
http://www.enfermedades-raras.org
Arabic Organisation For Rare Diseases
Full
Rare Diseases Sweden (Riksförbundet Sällsynta Diagnoser)
Full
http://www.sallsyntadiagnoser.se
Wilhelm Foundation
Full
http://www.wilhelmfoundation.org
International Federation of Psoriasis Associations (IFPA)
Associate
https://ifpa-pso.com/
Blackswan Foundation
Associate
http://www.blackswanfoundation.ch
Leukemia Patient Advocates Foundation (CML Advocates)
Full
https://www.cmladvocates.net/
Ali Kimara Rare Disease Foundation – TANZANIA
Full
https://www.facebook.com/alikimarasfoundation
Thai Rare Disease Foundation
Full
http://thairdf.org/?fbclid=IwAR1lroJP3giG39hwzBQ1ulsD4tKYYvjonshbFxcLsIkyNVWcz1g-j8w7oJE
CDH International
Full
https://cdhi.org/
Beacon
Associate
http://www.findacure.org.uk
International Gaucher Alliance
Full
https://gaucheralliance.org/
International Niemann-Pick Disease Alliance
Full
http://www.inpda.org
International Patient Organization for Primary Immunodeficiencies
Full
http://www.ipopi.org
International Prader-Willi Syndrome Organisation
Full
http://www.ipwso.org
Nicolaides-Baraitser Syndrome Worldwide Foundation
Full
https://ncbrs-worldwide-foundation.weebly.com/
The Ehlers-Danlos Society
Full
http://ehlers-danlos.com/
Timothy Syndrome Alliance
Associate
https://timothysyndrome.org.uk/
MCT8-AHDS Foundation Inc.
Full
http://www.mct8.info
Nord National Organization for Rare Disorders
Full
http://www.rarediseases.org
Latin Society of Pulmonary Hypertension (PH Latin Society)
Full
http://www.sociedadlatinahp.org
International Pemphigus and Pemphigoid Foundation
Full
https://www.pemphigus.org/
Skraban-Deardorff Syndrome Foundation
Full
http://www.skdeas.org
United Porphyrias Association
Full
https://www.porphyria.org/
Rare Disorders Zimbabwe (RDZ)
Full
https://raredisorderszim.org/
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