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Patient organisations

UNITED KINGDOM

Gloucestershire-STROUD

Timothy Syndrome Alliance (TSA)

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CYPRUS

Cyprus-LIMASSOL

TF - Theotokos Foundation

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FRANCE

OCCITANIE-MONTESQUIEU-DES-ALBERES

ASQTL - Association du Syndrome du QT Long

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GERMANY

Niedersachsen-BRAUNSCHWEIG

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

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IRELAND

County Dublin-DUBLIN

Long QT Support Group

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ITALY

VENETO-PADOVA

GECA - Associazione Giovani e Cuore Aritmico - ONLUS

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SPAIN

Cataluña-BARCELONA

SAMS: Asociación para la lucha contra los síndromes arrítmicos relacionados con la muerte súbita

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ERN

SPAIN

Madrid-MADRID

APACOR - Asociación de Pacientes Coronarios

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UNITED KINGDOM

Essex-ESSEX

SADS UK - Sudden Arrhythmic Death Syndrome, The Ashley Jolly SAD Trust

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AUSTRIA

WIEN-WIEN

Dachverband Österreichische Autistenhilfe

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BELGIUM

OOST-VLAANDEREN-GENT

VVA - Vlaamse Vereniging Autisme VZW

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CYPRUS

Cyprus-LIMASSOL

Cyprus Autism Association

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CZECH REPUBLIC

Capital City Prague-PRAHA

APLA -Asociace pomahajici lidem s autismem - APLA Praha, Stredni Cechy, o.s.

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CZECH REPUBLIC

Hradec Kralove-HRADEC KRALOVE

APLA - Asociace pomahajici lidem s autismem Vychodni Cechy

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ESTONIA

Tartu-TARTU

Eesti Autismiliit

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FRANCE

ILE-DE-FRANCE-PARIS

AMRYC - Association des Maladies Héréditaires du Rythme Cardiaque

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ERN

FRANCE

ILE-DE-FRANCE-PARIS

Fédération Française Sésame Autisme

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FRANCE

PROVENCE-ALPES-COTE D'AZUR-LA ROQUETTE-SUR-SIAGNE

Autisme France

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ITALY

FRIULI VENEZIA GIULIA-PORDENONE

Fondazione Bambini e Autismo - ONLUS

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ITALY

LAZIO-ROMA

ANGSA - Associazione Nazionale Genitori Persone con Autismo

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ITALY

PUGLIA-TARANTO

CUAMJ - Centro Universo Autismo Meridionale Jonico

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NETHERLANDS

Utrecht-DE BILT

NVA - Nederlandse Vereniging voor Autisme

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POLAND

Warszawa-WARSAW

Fundacja Synapsis

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PORTUGAL

CENTRO-COIMBRA

APPDA - Coimbra - Associação Portuguesa para as Perturbações do Desenvolvimento e Autismo, Coimbra

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PORTUGAL

CENTRO-VISEU

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

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PORTUGAL

NORTE-PALMEIRA BRG

AIA - Associação para a inclusão e Apoio ao Autista

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PORTUGAL

NORTE-VILA NOVA DE GAIA

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

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PORTUGAL

SUL-LISBOA

Federação Portuguesa de Autismo (membro da Autism Europe)

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PORTUGAL

SUL-VIANA DO CASTELO

AMA - Associação de Amigos do Autismo

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ROMANIA

ARGES-CURTEA DE ARGES

HAND-ROM - The Humanitarian Foundation Orientation and Integration Social HAND-ROM

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ROMANIA

CALARAS-CALARASI

Asociatia "Noi Orizonturi" Calarasi

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SPAIN

Madrid-MADRID

Confederación Autismo España

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SWEDEN

Region Stockholm-STOCKHOLM

Autism- och Aspergerförbundet

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SWITZERLAND

Suisse Alémanique-BERN

INSIEME Schweiz Suisse Svizzera

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SWITZERLAND

Suisse Alémanique-BIEL-BIENNE

as - Autismus Schweiz, Elternverein - Autisme Suisse, Association de parents - Autismo Svizzera, Associazione di genitori

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SWITZERLAND

Suisse Romande-LAUSANNE

autisme suisse romande

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FINLAND

Finland-HELSINKI

Sydänlapset ja -aikuiset ry

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ERN

IRELAND

County Dublin-DUBLIN

Heart Children Ireland

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SWEDEN

Region Stockholm-LIDINGÖ

Föräldraföreningen Anonymous

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UNITED KINGDOM

Kent-RAINHAM

HeartLine Association

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AUSTRALIA

New South Wales-DARLINGHURST

Genetic Alliance Australia (formerly Association of Genetic Support Australasia)

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AUSTRALIA

New South Wales-GLADESVILLE

AWCH - Association for the Wellbeing of Children in Healthcare

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AUSTRALIA

New South Wales-ST LEONARDS

Variety - the Children's Charity

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

RaDiOrg - Rare Diseases Belgium - BE

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUXELLES (NEDER-OVER-HEEMBEEK)

Rarity United A.S.B.L. - Organisation pour les parents d'enfants atteints d'une maladie rare ou non diagnostiquée

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BELGIUM

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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CYPRUS

Cyprus-LARNACA

Heart Patients and Friends Association

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CYPRUS

Cyprus-NICOSIA

Pancyprian Heart Patients' Association

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DENMARK

Hovedstaden-COPENHAGEN

Hjerteforeningen

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ERN

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

Hessen-FRANKFURT AM MAIN

Kinderherzstiftung der Deutschen Herzstiftung e. V.

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GERMANY

Niedersachsen-BRAUNSCHWEIG

HERZKIND e.V. - Verein zur Förderung der Beratung und Betreuung herzkranker Kinder und ihrer Familien

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GERMANY

Nordrhein-Westfalen-AACHEN

BVHK - Bundesverband Herzkranker Kinder e.V.

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GERMANY

Nordrhein-Westfalen-AACHEN

Bundesvereinigung JEMAH e.V.

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GERMANY

Nordrhein-Westfalen-OBERHAUSEN

IDHK - Interessengemeinschaft Das herzkranke Kind 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

Irish Heart Foundation

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IRELAND

County Dublin-DUBLIN

Rare Ireland-Family Support Network

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IRELAND

County Dublin-DUBLIN

Cardiac Risk in the Young in Ireland

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ITALY

CAMPANIA-NAPOLI

Associazione Cardiomiopatie e Malattie Rare Connesse-ONLUS

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ERN

ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

NETHERLANDS

Zuid-Holland-DEN HAAG

Harteraad

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ERN

POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

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ROMANIA

BACAU-BACAU

Organizatia trebuie- Bacau

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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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SPAIN

Andalucía-ALMERÍA

FPF: Fundación Poco Frecuente

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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

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-BROTTBY

Willefonden

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SWEDEN

Region Stockholm-SOLNA

RBU-Riksförbundet för Rörelsehindrade Barn och Ungdomar

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ERN

SWITZERLAND

Suisse Alémanique-USTER

KMSK - Förderverein für Kinder mit seltenen Krankheiten

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SWITZERLAND

Suisse Italienne-BELLINZONA

MGR - Associazione Malattie Genetiche Rare Svizzera Italiana

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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

Essex-BRAINTREE

CHF - Children's Heart Federation

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UNITED KINGDOM

Greater London-LONDON

ARC - Antenatal Results and Choices

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UNITED KINGDOM

Merseyside-WIRRAL

CHA - Children's Heart Association

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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 Glamorgan-CARMARTHEN

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

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Alliances and umbrella organisations

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL

BRUSSELS

Autism-Europe

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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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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
GERMANY

Hessen

FRANKFURT AM MAIN

ABAHF - Aktionsbündnis Angeborene Herzfehler

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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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SWITZERLAND

Suisse Romande

VUARRENS

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

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