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Patient organisations

NETHERLANDS

Utrecht-BAARN

Spierziekten Nederland

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CYPRUS

Cyprus-LIMASSOL

Association of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS"

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FRANCE

AUVERGNE-RHONE-ALPES-CLERMONT-FERRRAND

Association "Les P'tits CDG"

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ERN

GERMANY

Hamburg-HAMBURG

LISS e.V. - Anlaufstelle für Eltern und Angehörige an Lissenzephalie leidender Kinder e.V.

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GERMANY

Nordrhein-Westfalen-MÜLHEIM AN DER RUHR

Bundesverein CDG-Syndrom e.V.

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SPAIN

Madrid-BOADILLA DEL MONTE

AESCDG: Asociación Española del Síndrome CDG

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ERN

SWEDEN

Region Gotland-HEMSE

Svenska CDG-föreningen

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AUSTRALIA

Victoria-NORTH MELBOURNE

MDA - Muscular Dystrophy Australia

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AUSTRALIA

Western Australia-NEDLANDS

MDWA - Muscular Dystrophy Western Australia

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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.

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ERN

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

RaDiOrg - Rare Diseases Belgium - BE

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BELGIUM

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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CANADA

Colombie-Britannique-VANCOUVER

Rare Disease Foundation

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CANADA

Ontario-TORONTO

AboutFace

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CANADA

Ontario-TORONTO

MDC - Muscular Dystrophy Canada / DMC - Dystrophie Musculaire Canada

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CZECH REPUBLIC

Capital City Prague-PRAHA

Asociace muskularnich dystrofiku

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CZECH REPUBLIC

Capital City Prague-PRAHA

NS PKU - Narodni sdruzeni PKU a jinych DMP

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CZECH REPUBLIC

Vysocina-HAVLICKUV BROD

METODEJ

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FINLAND

Finland-MASKU

Neuroliitto

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FRANCE

NOUVELLE AQUITAINE-BORDEAUX

EwenLife Rare Maladies Rares

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FRANCE

OUTRE-MER-SAINT-PIERRE

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

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GERMANY

Baden-Württemberg-FREIBURG

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

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GERMANY

Bayern-ASCHAFFENBURG

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

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GREECE

ATTIKI-ATHENS

"95" - Rare Alliance Greece

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GREECE

THESSALONIKI-PYLAIA

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

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ITALY

LOMBARDIA-MILANO

APMMC - Associazione Prevenzione Malattie Metaboliche Congenite

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ITALY

LOMBARDIA-MONZA

ABM - Associazione per la Tutela del Bambino con Malattie Metaboliche

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ITALY

SICILIA-PALERMO

IRIS - Associazione Siciliana Malattie Ereditarie Metaboliche Rare OdV

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ITALY

TOSCANA-FIRENZE

AMMeC - Associazione Malattie Metaboliche Congenite - ONLUS

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ITALY

VENETO-PADOVA

UILDM - Unione Italiana Lotta alla Distrofia Muscolare

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ITALY

VENETO-PONTE SAN NICOLÒ

COMETA ASMME - Associazione Studio Malattie Metaboliche Ereditarie - ODV

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ITALY

VENETO-VERONA

AISMME - Associazione Italiana Sostegno Malattie Metaboliche Ereditarie APS

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MALTA

MALTA-VALLETTA

The National Alliance for Rare Diseases Support - Malta

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NETHERLANDS

Overijssel-ZWOLLE

VKS - Volwassenen, Kinderen en Stofwisselingsziekten

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POLAND

Gdansk-GDANSK

PPMD - Fundacja Parent Project Muscular Dystrophy

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POLAND

Warszawa-NOWE CHECHLO

Stowarzyszenie Pomocy Chorym na Dystrophie Musculorum

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PORTUGAL

NORTE-PORTO

APOFEN - Associação Portuguesa de Fenilcetonúria e Outras Doenças Metabólicas

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PORTUGAL

SUL-SEIXAL

Associação Portuguesa do Síndrome CDG e outras doenças metabólicas raras

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ROMANIA

BACAU-BACAU

Organizatia trebuie- Bacau

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SPAIN

Andalucía-ALMERÍA

FPF: Fundación Poco Frecuente

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SPAIN

Andalucía-JAÉN

Enfermedades Raras: Mas Visibles

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SPAIN

Castilla - León-TROBAJO DEL CAMINO

ADERLE: Asociación de Enfermedades Raras de León

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SPAIN

Galicia-A CORUÑA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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SPAIN

Madrid-MADRID

Federación Española de Enfermedades Metabólicas Hereditarias

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SPAIN

Madrid-MADRID

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

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SPAIN

Murcia-TOTANA

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

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SPAIN

Navarra-PAMPLONA

GERNA: Grupo de enfermedades raras de Navarra

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SWEDEN

Region Stockholm-SOLNA

RBU-Riksförbundet för Rörelsehindrade Barn och Ungdomar

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ERN

UNITED KINGDOM

Cheshire-CHESTER

Metabolic Support UK

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UNITED KINGDOM

West Glamorgan-CARMARTHEN

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

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AUSTRALIA

New South Wales-ARTARMON

Variety - the Children's Charity

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AUSTRALIA

New South Wales-DARLINGHURST

Genetic Alliance Australia

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AUSTRALIA

New South Wales-GLADESVILLE

AWCH - Association for the Wellbeing of Children in Healthcare

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AUSTRALIA

Victoria-PARKVILLE

GSNV - Genetic Support Network of Victoria

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AUSTRIA

NIEDERÖSTERREICH-HEILIGENKREUZ

Epilepsie Dachverband Österreich

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUXELLES

LFBE - La Ligue francophone belge contre l'Epilepsie ASBL

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BELGIUM

OOST-VLAANDEREN-EVERGEM

IKAROS Epilepsie-contactgroep vzw [Contactgroep Oost-Vlaanderen]

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BELGIUM

OOST-VLAANDEREN-GENT

Epilepsie Liga VZW

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BELGIUM

WEST-VLAANDEREN-KORTRIJK

URANUS - Contactgroep voor mensen met epilepsie [Contactgroep West-Vlaanderen]

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CANADA

Terre-Neuve-et-Labrador-ST. JOHN'S

CEA - Canadian Epilepsy Alliance

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CYPRUS

Cyprus-NICOSIE

Pancyprian Association For Rare Genetic Diseases « Unique Smiles »

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FINLAND

Finland-HELSINKI

Epilepsialiitto - Epilepsiförbundet ry

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FRANCE

AUVERGNE-RHONE-ALPES-ECULLY

Xtraordinaire - Association Nationale des Retards Mentaux liés au chromosome X

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FRANCE

ILE-DE-FRANCE-EVRY

AFM Téléthon - Association Française contre les Myopathies

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ERN

FRANCE

ILE-DE-FRANCE-PARIS

Epilepsie France

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FRANCE

ILE-DE-FRANCE-PARIS

FFRE - Fondation Française pour la Recherche sur l'Epilepsie

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GERMANY

Berlin-BERLIN

Deutsche Epilepsievereinigung e.V.

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GERMANY

Hamburg-HAMBURG

Epilepsie Selbsthilfegruppe Hamburg-Mitte

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GERMANY

Nordrhein-Westfalen-DORTMUND

E.B.E. - Epilepsie Bundes-Elternverband e.V.

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GERMANY

Nordrhein-Westfalen-KÖLN

Landesverband für Epilepsie-Selbsthilfe Nordrhein-Westfalen e.V.

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GREECE

ATTIKI-ATHENS

TO MELLON - Association of people with genetic disorders

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IRELAND

County Dublin-DUBLIN

Epilepsy Ireland

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IRELAND

County Dublin-DUBLIN

Rare Ireland-Family Support Network

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ITALY

EMILIA ROMAGNA-BOLOGNA

AEER - Associazione Epilessia Emilia Romagna OdV

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ITALY

LOMBARDIA-MILANO

AICE - Associazione Italiana Contro l'Epilessia ONLUS

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ITALY

LOMBARDIA-MILANO

FIE - Federazione Italiana Epilessie

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ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

NETHERLANDS

Utrecht-HOUTEN

EVN - Epilepsie Vereniging Nederland

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NORWAY

Østlandet-NESBRU

Foreningen for Muskelsyke

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NORWAY

Østlandet-OSLO

Norsk Epilepsiforbund

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POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

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POLAND

Warszawa-WARSAW

Polskie Stowarzyszenie na Rzecz Dzieci Chorych na Padaczke

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PORTUGAL

CENTRO-ESTORIL

CERCICA - Cooperativa de Educação e Reabilitação de Cidadão Inadaptados de Cascais

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PORTUGAL

NORTE-AMARANTE

CERCIMARANTE - Cooperativa de Educação e Reabilitação de Crianças Inadaptadas de Amarante

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PORTUGAL

NORTE-S. JOÃO DA MADEIRA

Cooperativa de Educação e Reabilitação de Crianças Inadaptadas S. João da Madeira

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PORTUGAL

NORTE-SANTA MARIA DA FEIRA

CERCIFEIRA - Cooperativa de Educação e Reabilitação de Crianças Inadaptadas de Sta. Maria da Feira

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PORTUGAL

NORTE-VILA NOVA DE FAMALICÃO

AFPAD - Associação Famalicence de Prevenção e Apoio à Deficiência

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PORTUGAL

SUL-ABRANTES

Centro de Recuperação Infantil de Abrantes

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PORTUGAL

SUL-FARO

AAPACDM - Associação Algarvia de Pais e Amigos de Crianças Diminuídas Mentais

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PORTUGAL

SUL-LISBOA

CEDEMA - Associação de Pais e Amigos dos Deficientes Mentais Adultos

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PORTUGAL

SUL-LISBOA

CERCILISBOA - Programa Comunitário de Intervenção Precoce

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PORTUGAL

SUL-LISBOA

LINADEM - Liga para o Estudo e Apoio à Inserção Social

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ROMANIA

SALAJ-ZALAU

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

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SLOVAKIA

Presovsky kraj-BARDEJOV

ZOGO - Zdruzenie Ojedlinelych Genetickych Ochorenie

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SPAIN

País Vasco-DONOSTIA

Asociación de voluntarios en favor del Síndrome de Dravet "ApoyoDravet"

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SWEDEN

Region Stockholm-SUNDBYBERG

Svenska epilepsiförbundet

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SWITZERLAND

Suisse Alémanique-USTER

KMSK - Förderverein für Kinder mit seltenen Krankheiten

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SWITZERLAND

Suisse Alémanique-ZÜRICH

Schweizerischer Verein für Epilepsie - Association Suisse de l'Epilepsie - Associazione Svizzera per l'Epilessia

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SWITZERLAND

Suisse Italienne-BELLINZONA

MGR - Associazione Malattie Genetiche Rare Svizzera Italiana

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SWITZERLAND

Suisse Romande-ARZIER

Xtraordinaire - Association Nationale des Retards Mentaux liés au chromosome X - contact Suisse.

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SWITZERLAND

Suisse Romande-LAUSANNE

Fondation Eclipse - Epilepsie Suisse romande

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SWITZERLAND

Suisse Romande-MONTHEY

AEMO - Association Enfance et Maladies Orphelines

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SWITZERLAND

Suisse Romande-SION

MaRaVal - maladies rares valais - seltene krankheiten wallis

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UNITED KINGDOM

Antrim and Newtownabbey-BELFAST

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

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UNITED KINGDOM

Buckinghamshire-GERRARDS CROSS

Epilepsy society

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UNITED KINGDOM

Greater London-LONDON

ARC - Antenatal Results and Choices

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UNITED KINGDOM

Kent-KENT

Epilepsy HERE - Help, Education and Research for Epilepsy

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UNITED KINGDOM

Oxfordshire-WANTAGE

SUDEP Action - making every epilepsy death count

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UNITED KINGDOM

Surrey-EPSOM

Gene People

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UNITED KINGDOM

Surrey-OXTED

Unique - The Rare Chromosome Disorder Support Group

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UNITED KINGDOM

West Yorkshire-LEEDS

Epilepsy Action

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

STAN Trefpunt VerSTANdelijke Handicap vzw

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-EVERE

INCLUSION A.S.B.L.

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CYPRUS

Cyprus-LIMASSOL

Saint Stylianos Foundation

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CYPRUS

Cyprus-NICOSIA

CSJF - Christos Stelios Ioannou Foundation

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FRANCE

ILE-DE-FRANCE-PARIS

UNAPEI - Union Nationale de parents, de personnes handicapées mentales et de leurs amis

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POLAND

Warszawa-WARSAW

Polskie Stowarzyszenie na Rzecz Osob z Uposledzeniem Umyslowym

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POLAND

Wroclaw-WROCLAW

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

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PORTUGAL

SUL-LISBOA

APPDA - Lisboa - Associação Portuguesa para as Perturbações do Desenvolvimento e Autismo - Lisboa

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PORTUGAL

SUL-MOITA

Raríssimas - Associação Nacional de Deficiências Mentais e Raras

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SWEDEN

Region Stockholm-SOLNA

Riksförbundet för barn, unga och vuxna med utvecklingsstörning, FUB

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SWITZERLAND

Suisse Alémanique-BERN

INSIEME Schweiz - Suisse - Svizzera (für Menschen mit einer geistigen Behinderung.)

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AUSTRIA

OBERÖSTERREICH-LINZ

MARATHON - Verein von Eltern und Angehörigen gegen Muskelerkrankungen bei Kindern

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AUSTRIA

WIEN-WIEN

Österreichische Gesellschaft für Muskelkranke

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BELGIUM

ANTWERPEN-BORGERHOUT

Spierziekten Vlaanderen vzw

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BELGIUM

HAINAUT-LA LOUVIERE

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

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BULGARIA

 South-West region-SOFIA

BNMDA - Bulgarian Neuromuscular Diseases Association

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CYPRUS

Cyprus-NICOSIA

MDA - Cyprus Muscular Dystrophy Association

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FINLAND

Finland-TURKU

Lihastautiliitto ry

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GERMANY

Baden-Württemberg-FREIBURG

DGM - Deutsche Gesellschaft für Muskelkranke e.V.

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GERMANY

Hamburg-HAMBURG

DMH - Deutsche Muskelschwund-Hilfe e.V.

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GREECE

GREECE-ATHENS

Muscular Dystrophy Association Hellas

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ERN

IRELAND

County Dublin-DUBLIN

Muscular Dystrophy Ireland

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ITALY

PIEMONTE-NICHELINO

AltroDomani ONLUS

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MOROCCO

Rabat-RABAT

AMM - Association marocaine de lutte contre les myopathies

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POLAND

Szczecin-SZCZECIN

Fundacja Pomocy Chorym na Zanik Miesni

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POLAND

Warszawa-WARSAW

Polskie Towarzystwo Chorob Nerwowo-Miesniowych

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PORTUGAL

NORTE-PORTO

APN - Associação Portuguesa de Doentes Neuromusculares

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PORTUGAL

SUL-LISBOA

Associação Portuguesa de Miastenia Gravis, Doenças Neuromusculares e Fibromialgia

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SWEDEN

Region Stockholm-SOLNA

Neuroförbundet (Neurologiskt handikappades riksförbund)

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SWITZERLAND

Suisse Alémanique-ZÜRICH

Schweizerische Muskelgesellschaft

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SWITZERLAND

Suisse Romande-YVERDON

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

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Alliances and umbrella organisations

UNITED KINGDOM

Tyne & Wear

NEWCASTLE UPON TYNE

TREAT-NMD : Neuromuscular Network Associations

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AUSTRIA

WIEN

WIEN

Pro Rare Austria - Allianz für seltene Erkrankungen

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AUSTRIA

WIEN

WIEN

Lobby4Kids

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL

BRUSSELS

RaDiOrg - Rare Diseases Belgium

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BELGIUM

NAMUR

WÉPION

Rare Disorders Belgium (RDB) ASBL

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BULGARIA

 South-West region

SOFIA

NAPRD: National Alliance of People with Rare Diseases

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CANADA

Ontario

TORONTO

CORD - Canadian Organization for Rare Disorders

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CROATIA

CROATIA

ZAGREB

Hrvatski savez za rijetke bolesti

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CYPRUS

Cyprus

NICOSIA

Cyprus Alliance for Rare Disorders

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DENMARK

Hovedstaden

TAASTRUP

Rare Disorders Denmark

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FINLAND

Finland

HELSINKI

Harvinaiset-verkosto

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FINLAND

Finland

HELSINKI

HARSO - Rare Diseases Alliance of Finland

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FRANCE

ILE-DE-FRANCE

PARIS

Alliance Maladies Rares

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FRANCE

ILE-DE-FRANCE

PARIS

EURORDIS - Rare Diseases Europe

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ERN
FRANCE

ILE-DE-FRANCE

SAINT-MICHEL-SUR-ORGE

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

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GERMANY

Berlin

BERLIN

ACHSE - Allianz Chronischer Seltener Erkrankungen e.V.

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GREECE

ATTIKI

ATHENS

PESPA - Greek Alliance for Rare Disease Network

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HUNGARY

Közép-Magyarország

BUDAPEST

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

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IRELAND

County Dublin

DUBLIN

RDI-Rare Disease Ireland

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IRELAND

County Dublin

DUBLIN

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

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ITALY

LAZIO

ROMA

UNIAMO FIMR onlus - Federazione Italiana Malattie Rare

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ERN
ITALY

PIEMONTE

TORINO

Federazione Malattie Rare Infantili

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LATVIA

LATVIA

RIGA

Latvian Alliance for Rare Diseases

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MOROCCO

Casablanca

CASABLANCA

Alliance Maladies Rares Maroc

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NETHERLANDS

Utrecht

SOEST

VSOP - Vereniging Samenwerkende Ouder- en Patiëntenorganisaties

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POLAND

Warszawa

WARSAW

ORPHAN - Krajowe Forum na rzecz terapii chorób rzadkich

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PORTUGAL

SUL

LISBOA

Fedra - Federação de Doenças Raras de Portugal

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PORTUGAL

SUL

LISBOA

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

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ROMANIA

SALAJ

ZALAU

RONARD - Alianta Nationala Pentru Boli Rare Romania Network

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SERBIA

Serbia

BELGRADE

NORBS - Nacionalna organizacija za retke bolesti Srbije

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SLOVAKIA

Bratislavsky kraj

PEZINOK

Slovenska aliancia zriedkavych chorob

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SPAIN

Cataluña

BARCELONA

FECAMM - Federació Catalana de Malalties Minoritaries

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SPAIN

Madrid

MADRID

FEDER: Federación Española de Enfermedades Raras

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SWEDEN

Region Stockholm

SUNDBYBERG

Sällsynta diagnoser Network

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SWITZERLAND

Suisse Romande

VUARRENS

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

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UNITED KINGDOM

Greater London

LONDON

Contact - For families with disabled children

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UNITED KINGDOM

Greater London

LONDON

GA UK : Genetic Alliance UK

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UNITED KINGDOM

Greater London

LONDON

RDUK : Rare Disease UK

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UNITED KINGDOM

Greater London

LONDON

SHCA - Specialised Health Care Alliance

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FRANCE

AUVERGNE-RHONE-ALPES

BRON

EpiCARE Patient Advocacy Group

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ERN
FRANCE

AUVERGNE-RHONE-ALPES

SAINT EGRÈVE

EFAPPE : Fédération des Associations en faveur des Personnes handicaPées par des Épilepsies Sévères

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SLOVENIA

SLOVENIA

LJUBLJANA

EAMDA : European alliance of Neuromuscular disorders associations

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SPAIN

Cataluña

BARCELONA

ASEM: Federación Española de Enfermedades Neuromusculares

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