Orphanet: Search for a patient organisation
x

Search for a patient organisation

* (*) mandatory field

Other search option(s)

98 Result(s)

Sort by

Member of a ERN =

Patient organisations

CYPRUS

Cyprus-LIMASSOL

TF - Theotokos Foundation

More information

FRANCE

AUVERGNE-RHONE-ALPES-CLERMONT-FERRRAND

Association "Les P'tits CDG"

More information
ERN

FRANCE

ILE-DE-FRANCE-PARIS

HPN France - Aplasie Médullaire

More information

GERMANY

Berlin-BERLIN

Aplastische Anämie & PNH e.V.

More information

GERMANY

Nordrhein-Westfalen-KÖLN

Stiftung Lichterzellen

More information

GERMANY

Nordrhein-Westfalen-MÜLHEIM AN DER RUHR

Bundesverein CDG-Syndrom e.V.

More information

ITALY

LOMBARDIA-MILANO

AIEPN - Associazione Italiana Emoglobinuria Parossistica Notturna ONLUS

More information

ITALY

UMBRIA-OTRICOLI

A.GE.P.I. odv - Associazione Gene Piga Italia

More information

NETHERLANDS

Noord-Holland-AMSTERDAM

Stichting AA & PNH Contactgroep

More information

SPAIN

Cataluña-IGUALADA

HPNE España: Asociación de Hemoglobinuria Paroxística Nocturna y Enfermedades Hematológicas Raras

More information

SPAIN

Madrid-BOADILLA DEL MONTE

AESCDG: Asociación Española del Síndrome CDG

More information
ERN

SWEDEN

Region Gotland-HEMSE

Svenska CDG-föreningen

More information

UNITED KINGDOM

Greater London-LONDON

PNH Support

More information

BELGIUM

ANTWERPEN-BEVEREN

BOKS - Belgische Organisatie voor Kinderen en Volwassenen met een Stofwisselingsziekte V.Z.W. - Association belge pour les enfants et adultes atteints d'une maladie métabolique A.S.B.L.

More information
ERN

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

RaDiOrg - Rare Diseases Belgium - BE

More information

BELGIUM

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

More information

CANADA

Colombie-Britannique-VANCOUVER

Rare Disease Foundation

More information

CANADA

Ontario-TORONTO

AboutFace

More information

CYPRUS

Cyprus-LIMASSOL

Association of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS"

More information

CZECH REPUBLIC

Capital City Prague-PRAHA

NS PKU - Narodni sdruzeni PKU a jinych DMP

More information

CZECH REPUBLIC

Vysocina-HAVLICKUV BROD

METODEJ

More information

FRANCE

NOUVELLE AQUITAINE-BORDEAUX

EwenLife Rare Maladies Rares

More information

FRANCE

OUTRE-MER-SAINT-PIERRE

Association pour la Sensibilisation aux Maladies Rares, Orphelines et Auto-Immunes à Saint-Pierre-et-Miquelon

More information

GERMANY

Baden-Württemberg-FREIBURG

SPATZ - Selbsthilfe für Kinder mit chronischer Stoffwechsel-, Hormon- oder Zuckererkrankung e.V.

More information

GREECE

ATTIKI-ATHENS

"95" - Rare Alliance Greece

More information

GREECE

ATTIKI-ATHENS

PASIFASMEN - Hellenic Association of Friends and Patients with rare metabolic and endocrinologic diseases

More information

GREECE

THESSALONIKI-PYLAIA

Association of Patients and Friends of Patients with Hereditary Metabolic Diseases "KRIKOS ZOIS"

More information

ITALY

LOMBARDIA-MILANO

APMMC - Associazione Prevenzione Malattie Metaboliche Congenite

More information

ITALY

LOMBARDIA-MONZA

ABM - Associazione per la Tutela del Bambino con Malattie Metaboliche

More information

ITALY

SICILIA-PALERMO

IRIS - Associazione Siciliana Malattie Ereditarie Metaboliche Rare OdV

More information

ITALY

TOSCANA-FIRENZE

AMMeC - Associazione Malattie Metaboliche Congenite - ONLUS

More information

ITALY

VENETO-PONTE SAN NICOLÒ

COMETA ASMME - Associazione Studio Malattie Metaboliche Ereditarie - ODV

More information

ITALY

VENETO-VERONA

AISMME - Associazione Italiana Sostegno Malattie Metaboliche Ereditarie APS

More information

MALTA

MALTA-VALLETTA

The National Alliance for Rare Diseases Support - Malta

More information

NETHERLANDS

Overijssel-ZWOLLE

VKS - Volwassenen, Kinderen en Stofwisselingsziekten

More information

PORTUGAL

NORTE-PORTO

APOFEN - Associação Portuguesa de Fenilcetonúria e Outras Doenças Metabólicas

More information

PORTUGAL

SUL-SEIXAL

Associação Portuguesa do Síndrome CDG e outras doenças metabólicas raras

More information

SPAIN

Andalucía-ALMERÍA

FPF: Fundación Poco Frecuente

More information

SPAIN

Castilla - León-TROBAJO DEL CAMINO

ADERLE: Asociación de Enfermedades Raras de León

More information

SPAIN

Galicia-A CORUÑA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

More information

SPAIN

Madrid-MADRID

Federación Española de Enfermedades Metabólicas Hereditarias

More information

SPAIN

Madrid-MADRID

INDEPF: Instituto de Investigación y Desarrollo Social de Enfermedades Poco Frecuentes

More information

SPAIN

Murcia-TOTANA

D'GENES Asociación de Enfermedades Raras y Trastornos Generalizados del Desarrollo de Totana

More information

SPAIN

Navarra-PAMPLONA

GERNA: Grupo de enfermedades raras de Navarra

More information

UNITED KINGDOM

Cheshire-CHESTER

Metabolic Support UK

More information

AUSTRALIA

New South Wales-ARTARMON

Variety - the Children's Charity

More information

AUSTRALIA

New South Wales-DARLINGHURST

Genetic Alliance Australia

More information

AUSTRALIA

New South Wales-GLADESVILLE

AWCH - Association for the Wellbeing of Children in Healthcare

More information

AUSTRALIA

Victoria-PARKVILLE

GSNV - Genetic Support Network of Victoria

More information

CYPRUS

Cyprus-NICOSIE

Pancyprian Association For Rare Genetic Diseases « Unique Smiles »

More information

GREECE

ATTIKI-ATHENS

TO MELLON - Association of people with genetic disorders

More information

IRELAND

County Dublin-DUBLIN

Rare Ireland-Family Support Network

More information

ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

More information
ERN

POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

More information

ROMANIA

SALAJ-ZALAU

Centrul de Informare pentru Boli Genetice Rare - Centre for Information about Rare Genetic Disorders

More information

SLOVAKIA

Presovsky kraj-BARDEJOV

ZOGO - Zdruzenie Ojedlinelych Genetickych Ochorenie

More information

SWEDEN

Region Stockholm-BROTTBY

Willefonden

More information

SWITZERLAND

Suisse Alémanique-USTER

KMSK - Förderverein für Kinder mit seltenen Krankheiten

More information

SWITZERLAND

Suisse Italienne-BELLINZONA

MGR - Associazione Malattie Genetiche Rare Svizzera Italiana

More information

SWITZERLAND

Suisse Romande-MONTHEY

AEMO - Association Enfance et Maladies Orphelines

More information

SWITZERLAND

Suisse Romande-SION

MaRaVal - maladies rares valais - seltene krankheiten wallis

More information

UNITED KINGDOM

Antrim and Newtownabbey-BELFAST

URDDAD Foundation - The Ultra Rare Disease, Disorders & Disabilities Foundation

More information

UNITED KINGDOM

Greater London-LONDON

ARC - Antenatal Results and Choices

More information

UNITED KINGDOM

Surrey-EPSOM

Gene People

More information

UNITED KINGDOM

Surrey-OXTED

Unique - The Rare Chromosome Disorder Support Group

More information

Alliances and umbrella organisations

NETHERLANDS

Gelderland

TIEL

PNH Global Alliance

More information
AUSTRIA

WIEN

WIEN

Pro Rare Austria - Allianz für seltene Erkrankungen

More information
BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL

BRUSSELS

RaDiOrg - Rare Diseases Belgium

More information
BELGIUM

NAMUR

WÉPION

Rare Disorders Belgium (RDB) ASBL

More information
BULGARIA

 South-West region

SOFIA

NAPRD: National Alliance of People with Rare Diseases

More information
CANADA

Ontario

TORONTO

CORD - Canadian Organization for Rare Disorders

More information
CROATIA

CROATIA

ZAGREB

Hrvatski savez za rijetke bolesti

More information
CYPRUS

Cyprus

NICOSIA

Cyprus Alliance for Rare Disorders

More information
DENMARK

Hovedstaden

TAASTRUP

Rare Disorders Denmark

More information
FINLAND

Finland

HELSINKI

Harvinaiset-verkosto

More information
FRANCE

ILE-DE-FRANCE

PARIS

Alliance Maladies Rares

More information
FRANCE

ILE-DE-FRANCE

PARIS

EURORDIS - Rare Diseases Europe

More information
ERN
FRANCE

ILE-DE-FRANCE

SAINT-MICHEL-SUR-ORGE

SOLHAND - Solidarité Handicap ''autour des maladies rares''

More information
GERMANY

Berlin

BERLIN

ACHSE - Allianz Chronischer Seltener Erkrankungen e.V.

More information
GREECE

ATTIKI

ATHENS

PESPA - Greek Alliance for Rare Disease Network

More information
HUNGARY

Közép-Magyarország

BUDAPEST

HUFERDIS - RIROSZ - Hungarian Federation of People with Rare and Congenital Diseases

More information
IRELAND

County Dublin

DUBLIN

IPPOSI - The Irish Platform for Patient Organisations, Science and Industry

More information
ITALY

PIEMONTE

TORINO

Federazione Malattie Rare Infantili

More information
LATVIA

LATVIA

RIGA

Latvian Alliance for Rare Diseases

More information
NETHERLANDS

Utrecht

SOEST

VSOP - Vereniging Samenwerkende Ouder- en Patiëntenorganisaties

More information
POLAND

Warszawa

WARSAW

ORPHAN - Krajowe Forum na rzecz terapii chorób rzadkich

More information
PORTUGAL

SUL

LISBOA

Fedra - Federação de Doenças Raras de Portugal

More information
PORTUGAL

SUL

LISBOA

RD-Portugal - União das Associações das Doenças Raras de Portugal,

More information
ROMANIA

SALAJ

ZALAU

RONARD - Alianta Nationala Pentru Boli Rare Romania Network

More information
SERBIA

Serbia

BELGRADE

NORBS - Nacionalna organizacija za retke bolesti Srbije

More information
SLOVAKIA

Bratislavsky kraj

PEZINOK

Slovenska aliancia zriedkavych chorob

More information
SPAIN

Cataluña

BARCELONA

FECAMM - Federació Catalana de Malalties Minoritaries

More information
SPAIN

Madrid

MADRID

FEDER: Federación Española de Enfermedades Raras

More information
SWITZERLAND

Suisse Romande

VUARRENS

ProRaris - Alliance Maladies Rares-Suisse; Allianz Seltener Krankheiten-Schweiz; Alleanza Malattie Rare-Svizzera

More information
UNITED KINGDOM

Greater London

LONDON

Contact - For families with disabled children

More information
UNITED KINGDOM

Greater London

LONDON

GA UK : Genetic Alliance UK

More information
UNITED KINGDOM

Greater London

LONDON

RDUK : Rare Disease UK

More information
UNITED KINGDOM

Greater London

LONDON

SHCA - Specialised Health Care Alliance

More information