Orphanet: Search for a patient organisation
x

Search for a patient organisation

* (*) mandatory field

Other search option(s)

120 Result(s)

Sort by

Member of a ERN =

Patient organisations

UNITED KINGDOM

Nottinghamshire-NOTTINGHAM

MDSG - Myotonic Dystrophy Support Group

More information

ITALY

SICILIA-SAN GIOVANNI LA PUNTA

Associazione Gli Equilibristi HIBM

More information
ERN

SWITZERLAND

Suisse Alémanique-BASEL

VKM - Verein Kleinwüchsiger Menschen der Schweiz

More information

SWITZERLAND

Suisse Romande-CULLY

ARPPT - Association Romande des Personnes de Petite Taille

More information

UNITED KINGDOM

Derbyshire-ALFRETON

FDSS UK - Fibrous Dysplasia Support Society

More information

NETHERLANDS

Utrecht-BAARN

Spierziekten Nederland

More information

NORWAY

Řstlandet-OSLO

NIK - Norsk Interesseforening for Kortvokste

More information

PORTUGAL

SUL-ÉVORA

ANDO Portugal - Associaçăo Nacional de Displasias Ósseas

More information

BELGIUM

ANTWERPEN-TURNHOUT

Alzheimer Liga Vlaanderen vzw

More information

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

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 ŕ Saint-Pierre-et-Miquelon

More information

GERMANY

Bayern-ERDWEG

Bundesselbsthilfevereinigung für Kinder, Jugendliche und Erwachsene mit seltenen, chronischen Skelett-Erkrankungen e.V.

More information

GERMANY

Niedersachsen-BRAUNSCHWEIG

LiBERO - Hilfe für das Kind mit Krankheiten des Nervensystems e.V.

More information

GREECE

ATTIKI-ATHENS

"95" - Rare Alliance Greece

More information

ITALY

TOSCANA-FIRENZE

Voa Voa! Onlus Amici di Sofia

More information

MALTA

MALTA-VALLETTA

The National Alliance for Rare Diseases Support - Malta

More information

NETHERLANDS

Utrecht-AMERSFOORT

Alzheimer Nederland

More information

NORWAY

Řstlandet-NESBRU

Foreningen for Muskelsyke

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 CORUŃA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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

SWEDEN

Region Stockholm-SOLNA

RBU-Riksförbundet för Rörelsehindrade Barn och Ungdomar

More information
ERN

SWEDEN

Region Stockholm-STOCKHOLM

Demensförbundet

More information

SWITZERLAND

Suisse Alémanique-BERN

Alzheimer Schweiz - Alzheimer Suisse - Alzheimer Svizzera

More information

TURKEY

TURKEY-ISTANBUL

Türkish Alzheimer Society

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

FRANCE

ILE-DE-FRANCE-EVRY

AFM Téléthon - Association Française contre les Myopathies

More information
ERN

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

POLAND

Wroclaw-WROCLAW

WSPOLNIE - Stowarzyszenie na Rzecz Dzieci z Rzadkimi Chorobami Genetycznymi i Ich Rodzin

More information

ROMANIA

BACAU-BACAU

Organizatia trebuie- Bacau

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

SWEDEN

Region Stockholm-LIDINGÖ

Föräldraföreningen Anonymous

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

UNITED KINGDOM

West Glamorgan-CARMARTHEN

Cerebra (Support for children with brain-related neurological conditions)

More information

AUSTRIA

OBERÖSTERREICH-LINZ

MARATHON - Verein von Eltern und Angehörigen gegen Muskelerkrankungen bei Kindern

More information

AUSTRIA

WIEN-WIEN

Österreichische Gesellschaft für Muskelkranke

More information

BELGIUM

ANTWERPEN-BORGERHOUT

Spierziekten Vlaanderen vzw

More information

BELGIUM

HAINAUT-LA LOUVIERE

ABMM - Association Belge contre les Maladies neuro-Musculaires A.S.B.L.

More information

BULGARIA

 South-West region-SOFIA

BNMDA - Bulgarian Neuromuscular Diseases Association

More information

CYPRUS

Cyprus-NICOSIA

MDA - Cyprus Muscular Dystrophy Association

More information

FINLAND

Finland-TURKU

Lihastautiliitto ry

More information

GERMANY

Baden-Württemberg-FREIBURG

DGM - Deutsche Gesellschaft für Muskelkranke e.V.

More information

GERMANY

Hamburg-HAMBURG

DMH - Deutsche Muskelschwund-Hilfe e.V.

More information

GREECE

GREECE-ATHENS

Muscular Dystrophy Association Hellas

More information
ERN

IRELAND

County Dublin-DUBLIN

Muscular Dystrophy Ireland

More information

ITALY

PIEMONTE-NICHELINO

AltroDomani ONLUS

More information

MOROCCO

Rabat-RABAT

AMM - Association marocaine de lutte contre les myopathies

More information

POLAND

Szczecin-SZCZECIN

Fundacja Pomocy Chorym na Zanik Miesni

More information

POLAND

Warszawa-WARSAW

Polskie Towarzystwo Chorob Nerwowo-Miesniowych

More information

PORTUGAL

NORTE-PORTO

APN - Associaçăo Portuguesa de Doentes Neuromusculares

More information

PORTUGAL

SUL-LISBOA

Associaçăo Portuguesa de Miastenia Gravis, Doenças Neuromusculares e Fibromialgia

More information

SWEDEN

Region Stockholm-SOLNA

Neuroförbundet (Neurologiskt handikappades riksförbund)

More information

SWITZERLAND

Suisse Alémanique-ZÜRICH

Schweizerische Muskelgesellschaft

More information

SWITZERLAND

Suisse Romande-YVERDON

ASRIMM - Association Suisse Romande Intervenant contre les Maladies neuro-Musculaires

More information

Alliances and umbrella organisations

AUSTRIA

WIEN

WIEN

Pro Rare Austria - Allianz für seltene Erkrankungen

More information
AUSTRIA

WIEN

WIEN

Lobby4Kids

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
FINLAND

Finland

HELSINKI

HARSO - Rare Diseases Alliance of Finland

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

RDI-Rare Disease Ireland

More information
IRELAND

County Dublin

DUBLIN

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

More information
ITALY

LAZIO

ROMA

UNIAMO FIMR onlus - Federazione Italiana Malattie Rare

More information
ERN
ITALY

PIEMONTE

TORINO

Federazione Malattie Rare Infantili

More information
LATVIA

LATVIA

RIGA

Latvian Alliance for Rare Diseases

More information
LUXEMBOURG

LUXEMBOURG

LUXEMBOURG

Alzheimer Europe

More information
MOROCCO

Casablanca

CASABLANCA

Alliance Maladies Rares Maroc

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 - Federaçăo de Doenças Raras de Portugal

More information
PORTUGAL

SUL

LISBOA

RD-Portugal - Uniăo das Associaçőes 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

Cataluńa

BARCELONA

FECAMM - Federació Catalana de Malalties Minoritaries

More information
SPAIN

Madrid

MADRID

FEDER: Federación Espańola de Enfermedades Raras

More information
SWEDEN

Region Stockholm

SUNDBYBERG

Sällsynta diagnoser Network

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

Alzheimer's Disease International

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
SLOVENIA

SLOVENIA

LJUBLJANA

EAMDA : European alliance of Neuromuscular disorders associations

More information
SPAIN

Cataluńa

BARCELONA

ASEM: Federación Espańola de Enfermedades Neuromusculares

More information
UNITED KINGDOM

Tyne & Wear

NEWCASTLE UPON TYNE

TREAT-NMD : Neuromuscular Network Associations

More information