x

Search for a patient organisation

* (*) mandatory field

Other search option(s)

106 Result(s)

Sort by

Member of a ERN =

Patient organisations

CANADA

Ontario-WHITBY

Canadian Chiari Association

More information

FINLAND

Finland-MASKU

Suomen Chiari- ja syringomyeliayhdistys ry- Finlands Chiari- och syringomyeliförening rf

More information

FRANCE

ILE-DE-FRANCE-GENNEVILLIERS

A.M.I.S. Association Maladies Inconnues Solidaires - Clair de lune pour les M.O.M. (Maladies Orphelines Méconnues)

More information

FRANCE

NORMANDIE-CAEN

Arc-en-Sed

More information

FRANCE

PAYS DE LA LOIRE-TREILLIERES

APAISER S&C : Association Pour Aider, Informer, Soutenir Etudes & Recherches pour la Syringomyélie & le Chiari

More information

GERMANY

Bayern-BRUCKMÜHL

Syringomyelie Hilfe München

More information

GERMANY

Bayern-MARKTREDWITZ

DSCM - Deutsche Syringomyelie und Chiari Malformation e.V.

More information

GERMANY

Hessen-ROSBACH

Interessengemeinschaft für Syringomyelie und Chiari Malformation

More information

IRELAND

County Meath-SLANE

Syringomyelia Chiari Ireland Group

More information

ITALY

PIEMONTE-VINOVO

AISMAC - Associazione Italiana Siringomielia e Arnold Chiari

More information

ITALY

PUGLIA-ALTAMURA

A.MA.R.A.M. - Associazione Malattie Rare dell'Alta Murgia APS/ETS

More information

NETHERLANDS

Zuid-Holland-LEIDSCHENDAM

Syringomyelie Patiënten Vereniging

More information

SPAIN

Aragón-ZARAGOZA

AEMC: Asociación Española de Afectados por Malformaciones Craneo-cervicales

More information

SPAIN

Castilla - León-LEÓN

ALER: Asociación Leonesa de Enfermedades Raras y sin diagnóstico

More information

UNITED KINGDOM

Greater London-WEB-BASED ONLY

ACT - The Ann Conroy Trust

More information

AUSTRIA

TIROL-INNSBRUCK

Spina bifida & Hydrocephalus ARGE Tirol

More information

AUSTRIA

WIEN-WIEN

Spina Bifida & Hydrocephalus Österreich

More information

BELGIUM

LIEGE-DISON

ASBBF - Association Spina Bifida Belge Francophone ASBL

More information

BELGIUM

OOST-VLAANDEREN-EREMBODEGEM

VSH - Vereniging voor Spina Bifida en Hydrocephalus VZW

More information

FRANCE

ILE-DE-FRANCE-LE-PLESSIS-TREVISE

ASBH - Association Nationale Spina Bifida et Handicaps associés

More information

GERMANY

Bayern-FÜRTH

SHG SYRINX-Nordbayern

More information

GERMANY

Hessen-DARMSTADT

Syringomyelie Selbsthilfeorganisation Hessen/DA e.V.

More information

GERMANY

Nordrhein-Westfalen-DORTMUND

Arbeitsgemeinschaft Spina Bifida und Hydrocephalus e.V.

More information

GERMANY

Saarland-SCHIFFWEILER

Syringomyelie Selbsthilfegruppe Saarland

More information

IRELAND

County Dublin-CLONDALKIN

Spina Bifida Hydrocephalus Ireland

More information

PORTUGAL

SUL-LISBOA

ASBIHP - Associação Spina Bifida e Hidrocefalia de Portugal

More information

AUSTRALIA

Queensland-WOOLLOONGABBA

SBH Queensland Inc

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

FINLAND

Finland-MASKU

Neuroliitto

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

Bayern-ASCHAFFENBURG

Kindernetzwerk e.V. - Selbsthilfe für Familien mit Kindern und jungen Erwachsenen mit chronischen Erkrankungen und Behinderungen

More information

GREECE

ATTIKI-ATHENS

"95" - Rare Alliance Greece

More information

MALTA

MALTA-VALLETTA

The National Alliance for Rare Diseases Support - Malta

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

SPAIN

Andalucía-ALMERÍA

FPF: Fundación Poco Frecuente

More information

SPAIN

Andalucía-JAÉN

Enfermedades Raras: Mas Visibles

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

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

UNITED KINGDOM

West Glamorgan-CARMARTHEN

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

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

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

SPAIN

Cataluña

BARCELONA

FEMACPA: Federación Española de Malformación de Chiari y Patologías Asociadas

More information
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
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 - 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
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

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