Knowledge on rare diseases and orphan drugs
COVID-19 & Rare diseasesSearch for a patient organisation
111 Result(s)
72 Patient organisation(s)
Member of a ERN =
Variety - the Children's Charity
Variety - the Children's Charity
Garvan Institute of Medical Research
AWCH - Association for the Wellbeing of Children in Healthcare
Association for the Wellbeing of Children in Healthcare
GSNV - Genetic Support Network of Victoria
Murdoch Children's Research Institute
Asbl Chiara VDS - Chiara Vie, Don d'organes et Solidarité Chiara VDS nonprofit organisation - Chiara Vie, Don d'organes et Solidarité
Chiara Vie, Don d'organes et Solidarité
Rare Disorders Belgium (RDB) ASBL - BE Rare Disorders Belgium (RDB) nonprofit organization
RARE DISORDERS BELGIUM
Canadian Association for Porphyria - Association Canadienne de Porphyrie
Canadian Association for Porphyria - Association Canadienne de Porphyrie
Rare Disease Foundation
Association of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS"
Association of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS"
Pancyprian Association For Rare Genetic Diseases « Unique Smiles »
Pancyprian Association For Rare Genetic Diseases « Unique Smiles »
Porfyriforeningen Danmark Porfyriforeningen Danmark
Porfyriforeningen Danmark
Allergia-, Iho- ja Astmaliitto ry
Allergia-, iho- ja astmaliitto ry
Munuais- ja maksaliitto, Njur- och leverförbundet
Munuais- ja maksaliitto
AFMAP - Association Française des Malades Atteints de Porphyries AFMAP - Association Française des Malades Atteints de Porphyries
Association Française des Malades Atteints de Porphyries
EwenLife Rare Maladies Rares EwenLife Rare Diseases
EwenLife Rare Maladies Rares
Berliner Leberring e.V. Berliner Leberring e.V.
Charité - Universitätsmedizin Berlin (CBF)
Verein leberkrankes Kind e.V. Verein leberkrankes Kind e.V.
Verein leberkrankes Kind e.V. -Geschäftsstelle
Deutsche Leberhilfe e.V. Deutsche Leberhilfe e.V.
Deutsche Leberhilfe e.V.
Selbsthilfegruppe Porphyrie e.V. Selbsthilfegruppe Porphyrie e.V.
Selbsthilfegruppe Porphyrie
Lebertransplantierte Deutschland e.V. Lebertransplantierte Deutschland e.V.
Lebertransplantierte Deutschland e.V.
"95" - Rare Alliance Greece "95" - Rare Alliance Greece
"95" - Rare Alliance Greece
TO MELLON - Association of people with genetic disorders
TO MELLON - Association of people with genetic disorders
Rare Ireland-Family Support Network
Rare Ireland-Family support Network
AS.NA.MA.RA.DE.VA. - Associazione Nazionale Malattie Rare Dermatologiche Vascolari ODV AS.NA.MA.RA.DE.VA. - Associazione Nazionale Malattie Rare Dermatologiche Vascolari ODV
Associazione Nazionale Malattie Rare Dermatologiche Vascolari ODV
APMMC - Associazione Prevenzione Malattie Metaboliche Congenite APMMC - Associazione Prevenzione Malattie Metaboliche Congenite
ASST Santi Paolo e Carlo, Ospedale San Paolo - Università degli Studi di Milano
Associazione Amici della Porfiria - San Pio da Pietrelcina Associazione Amici della Porfiria - San Pio da Pietrelcina
Fondazione IRCCS Ospedale Casa Sollievo della Sofferenza
IRIS - Associazione Siciliana Malattie Ereditarie Metaboliche Rare OdV IRIS - Associazione Siciliana Malattie Ereditarie Metaboliche Rare OdV
Associazione Siciliana Malattie Ereditarie Metaboliche Rare OdV
AMMeC - Associazione Malattie Metaboliche Congenite - ONLUS AMMeC - Associazione Malattie Metaboliche Congenite - ONLUS
Azienda Ospedaliera Universitaria Anna Meyer I.R.C.C.S.
COMETA ASMME - Associazione Studio Malattie Metaboliche Ereditarie - ODV COMETA ASMME - Associazione Studio Malattie Metaboliche Ereditarie - ODV
Associazione Studio Malattie Metaboliche Ereditarie - ODV
AISMME - Associazione Italiana Sostegno Malattie Metaboliche Ereditarie APS AISMME - Associazione Italiana Sostegno Malattie Metaboliche Ereditarie APS
Associazione Italiana Sostegno Malattie Metaboliche Ereditarie APS
Biedriba Genetiski parmantoto slimibu pacientiem un lidzcilvekiem "Saknes" Society for Genetic hereditary diseases patients and peers "Saknes"
Society for Genetic hereditary diseases patients and peers "Saknes"
The National Alliance for Rare Diseases Support - Malta
The National Alliance for Rare Diseases Support - Malta
Nederlandse Leverpatiënten Vereniging Nederlandse Leverpatiënten Vereniging
Nederlandse Leverpatiënten Vereniging
APCDG - Associação Portuguesa do Síndrome CDG e outras doenças metabólicas raras APCDG - Portuguese Association of CDG Syndrome and other rare metabolic disorders
APCDG - Associação Portuguesa do Síndrome CDG e outras doenças metabólicas raras
ZOGO - Zdruzenie Ojedlinelych Genetickych Ochorenie ZOGO - Zdruzenie Ojedlinelych Genetickych Ochorenie
ZOGO - Zdruzenie Ojedlinelych Genetickych Ochorenie
FPF: Fundación Poco Frecuente FPF: Fundación Poco Frecuente
Fundación Poco Frecuente
Enfermedades Raras: Mas Visibles Enfermedades Raras: Mas Visibles
Enfermedades Raras: Mas Visibles
ADERLE: Asociación de Enfermedades Raras de León ADERLE: Asociación de Enfermedades Raras de León
Asociación de Enfermedades Raras de León
AEP: Asociación Española de Porfiria AEP: Asociación Española de Porfiria
Asociación Española de Porfiria
FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas
Federación Gallega de Enfermedades Raras e Crónicas
Federación Española de Enfermedades Metabólicas Hereditarias Spanish Federation of Inherited Metabolic Disorders
Federación Española de Fenilcetonuria y Otros Trastornos Metabólicos PKU y OTM
INDEPF: Instituto de Investigación y Desarrollo Social de Enfermedades Poco Frecuentes INDEPF: Instituto de Investigación y Desarrollo Social de Enfermedades Poco Frecuentes
Instituto de Investigación y Desarrollo Social de Enfermedades Poco Frecuentes
GERNA: Grupo de enfermedades raras de Navarra GERNA: Grupo de enfermedades raras de Navarra
GERNA - Grupo de enfermedades raras de Navarra
RMP - Riksföreningen mot Porfyrisjukdomar RMP - Swedish Porphyria Association
Riksföreningen mot Porfyrisjukdomar
SGP - Schweizerische Gesellschaft für Porphyrie - Société Suisse de Porphyrie - Società Svizzera per la Porfiria Swiss Society for Porphyria
Schweizerische Gesellschaft für Porphyrie - Institut für Labormedizin Triemli
MGR - Associazione Malattie Genetiche Rare Svizzera Italiana MGR - Association in the italian part of Switzerland for rare genetic diseases
Associazione Malattie Genetiche Rare Svizzera Italiana
AEMO - Association Enfance et Maladies Orphelines Support group of Chilhood and Orphan diseases
AEMO - Association Enfance et Maladies Orphelines
URDDAD Foundation - The Ultra Rare Disease, Disorders & Disabilities Foundation
The Ultra Rare Disease,Disorders & Disabilities Foundation Ltd
BPA - British Porphyria Association
British Porphyria Association
Unique - The Rare Chromosome Disorder Support Group
Unique - The Rare Chromosome Disorder Support Group
Children's Liver Disease Foundation
Children's Liver Disease Foundation
39 Alliance(s) and umbrella organisation(s)
Member of a ERN =
Pro Rare Austria - Allianz für seltene Erkrankungen Pro Rare Austria - Allianz für seltene Erkrankungen
Allianz für seltene Erkrankungen
Rare Disorders Belgium (RDB) ASBL Rare Disorders Belgium (RDB) ASBL
RARE DISORDERS BELGIUM
NAPRD: National Alliance of People with Rare Diseases NAPRD: National Alliance of People with Rare Diseases
National Gaucher Association
CORD - Canadian Organization for Rare Disorders
Canadian Organization for Rare Disorders
Hrvatski savez za rijetke bolesti Hrvatski savez za rijetke bolesti
Hrvatski savez za rijetke bolesti
Cyprus Alliance for Rare Disorders
C.A.R.D. - Cyprus Alliance for Rare Disorders
SOLHAND - Solidarité Handicap ''autour des maladies rares'' SOLHAND - Solidarité Handicap ''autour des maladies rares''
Solidarité Handicap ''autour des maladies rares''
ACHSE - Allianz Chronischer Seltener Erkrankungen e.V. ACHSE - Allianz Chronischer Seltener Erkrankungen e.V.
ACHSE e.V. c/o DRK Kliniken Berlin Mitte
PESPA - Greek Alliance for Rare Disease Network
Greek Alliance for Rare Disease
HUFERDIS - RIROSZ - Hungarian Federation of People with Rare and Congenital Diseases
RIROSZ - Hungarian Federation of People with Rare and Congenital Diseases
IPPOSI - The Irish Platform for Patient Organisations, Science and Industry
Irish Platform for Patient Organisations, Science and Industry
Federazione Malattie Rare Infantili Federazione Malattie Rare Infantili
Federazione Malattie Rare Infantili
UNIAMO FIMR onlus - Federazione Italiana Malattie Rare UNIAMO FIMR onlus - Federazione Italiana Malattie Rare
UNIAMO FIMR Onlus - Federazione Italiana Malattie Rare
Latvijas Reto slimibu alianse Latvijas Reto slimibu alianse
Latvian Alliance of Rare Diseases
Alliance Maladies Rares Maroc Alliance Maladies Rares Maroc
Alliance Maladies Rares Maroc
ORPHAN - Krajowe Forum na rzecz terapii chorób rzadkich ORPHAN - Krajowe Forum na rzecz terapii chorób rzadkich
Krajowe Forum na rzecz terapii chorob rzadkich
FEDRA - Federação de Doenças Raras de Portugal FEDRA - Federação de Doenças Raras de Portugal
FEDRA - Federação de doenças Raras de Portugal
RD-Portugal - União das Associações das Doenças Raras de Portugal RD-Portugal - União das Associações das Doenças Raras de Portugal
RD-Portugal - União das Associações das Doenças Raras de Portugal
RONARD - Alianta Nationala Pentru Boli Rare Romania Network RONARD - Alianta Nationala Pentru Boli Rare Romania Network
Centrul de Informare pentru Boli Genetice Rare
NORBS - Nacionalna organizacija za retke bolesti Srbije NORBS - Nacionalna organizacija za retke bolesti Srbije
NORBS - National Organization for Rare Diseases of Serbia
Slovenska aliancia zriedkavych chorob Slovenska aliancia zriedkavych chorob
Slovak RD Alliance
FECAMM - Federació Catalana de Malalties Minoritaries FECAMM - Federació Catalana de Malalties Minoritaries
FECAMM - Federació Catalana de Malalties Minoritaries
FEDER: Federación Española de Enfermedades Raras FEDER: Federación Española de Enfermedades Raras
Federación Española de Enfermedades Raras
Sällsynta diagnoser Network Sällsynta diagnoser Network
Riksförbundet Sällsynta diagnoser
Global porphyria advocacy coalition
Global porphyria advocacy coalition
SHCA - Specialised Health Care Alliance
Specialised Healthcare Alliance