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Patient organisations

ITALY

LAZIO-ROMA

AISJAC - Associazione Italiana Sindrome di Joubert e Atassie Congenite - ONLUS

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CANADA

Ontario-ESSEX

Joubert Syndrome and Related Disorders (JSRD) Canadian Group

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SPAIN

Andalucía-FUENTE PALMERA

Asociación de Familias con Síndrome de Joubert y Trastornos Relacionados

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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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FINLAND

Finland-HELSINKI

Munuais- ja maksaliitto, Njur- och leverförbundet

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ERN

FRANCE

ILE-DE-FRANCE-LEVALLOIS-PERRET

Xtraordinaire - Association Nationale des Retards Mentaux liés au chromosome X

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GERMANY

Baden-Württemberg-BRETZFELD

LD - Lebertransplantierte Deutschland e.V.

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GERMANY

Nordrhein-Westfalen-KÖLN

Deutsche Leberhilfe e.V.

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ERN

GERMANY

Nordrhein-Westfalen-WEISSACH IM TAL

Verein leberkrankes Kind e.V.

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ERN

NETHERLANDS

Utrecht-HOOGLAND

Nederlandse Leverpatiënten Vereniging

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ERN

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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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

Galicia-ORENSE

Asociación Anasbabi Ciliopatías

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SPAIN

Madrid-MADRID

HePA: Asociación Española de Ayuda a Niños con Enfermedades Hepáticas y Transplantes Hepáticos

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ERN

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-LIDINGÖ

Föräldraföreningen Anonymous

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SWITZERLAND

Suisse Alémanique-SISSACH

EVLK - Elternvereinigung lebererkrankter Kinder.Association des parents d'enfants malades du foie.Associazione dei genitori di bambini malati al fegato

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SWITZERLAND

Suisse Romande-ARZIER

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

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UNITED KINGDOM

Hampshire-BOURNEMOUTH

British Liver Trust

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UNITED KINGDOM

West Midlands-BIRMINGHAM

Children's Liver Disease Foundation

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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

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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FINLAND

Finland-TAMPERE

Kehitysvammaisten Tukiliitto

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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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FRANCE

OCCITANIE-PORTET SUR GARONNE

CSC - Connaître les Syndromes Cérébelleux

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GREECE

ATTIKI-ATHENS

TO MELLON - Association of people with genetic disorders

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IRELAND

County Dublin-DUBLIN

Rare Ireland-Family Support Network

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ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

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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

NORTE-CASTRO MARIM

APAHE - Associação Portuguesa de Ataxias Hereditárias

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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-LISBOA

Raríssimas - Associação Nacional de Deficiências Mentais e Raras

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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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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

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

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SWITZERLAND

Suisse Alémanique-USTER

KMSK - Kinder mit seltenen Krankenheiten - Gemeinnütziger Förderverein

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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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SWITZERLAND

Suisse Romande-VUARRENS

UniRares - Association suisse de patients isolés, antenne romande

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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

Greater London-LONDON

ARC - Antenatal Results and Choices

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UNITED KINGDOM

Surrey-OXTED

Unique - The Rare Chromosome Disorder Support Group

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UNITED KINGDOM

West Sussex-HAYWARDS HEATH

GDUK- Genetic Disorders UK

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CANADA

Québec-MONTRÉAL

ACAF - Association canadienne des ataxies familiales - Fondation Claude St-Jean

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NETHERLANDS

Gelderland-TIEL

Ataxie Vereniging Nederland

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NORWAY

Østlandet-NESBRU

Foreningen for Muskelsyke

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UNITED KINGDOM

West Glamorgan-CARMARTHEN

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

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GERMANY

Baden-Württemberg-STUTTGART

DHAG - Deutsche Heredo-Ataxie-Gesellschaft. e.V.

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IRELAND

County Wexford-WEXFORD

Ataxia Foundation Ireland

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ITALY

LOMBARDIA-MILANO

AISA - Associazione Italiana per la Lotta alle Sindromi Atassiche - ONLUS

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SPAIN

Castilla - León-VALLADOLID

FEDAES - Federación de Ataxias de España

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SWEDEN

Region Stockholm-SOLNA

Neuroförbundet (Neurologiskt handikappades riksförbund)

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UNITED KINGDOM

Greater London-LONDON

Ataxia UK

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BELGIUM

ANTWERPEN-TURNHOUT

Alzheimer Liga Vlaanderen vzw

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GERMANY

Niedersachsen-BRAUNSCHWEIG

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

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ITALY

TOSCANA-FIRENZE

Voa Voa! Onlus Amici di Sofia

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NETHERLANDS

Utrecht-AMERSFOORT

Alzheimer Nederland

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SWEDEN

Region Stockholm-STOCKHOLM

Demensförbundet

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SWITZERLAND

Suisse Alémanique-BERN

Alzheimer Schweiz - Alzheimer Suisse - Alzheimer Svizzera

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TURKEY

TURKEY-ISTANBUL

Türkish Alzheimer Society

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Alliances and umbrella organisations

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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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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UNITED KINGDOM

Greater London

LONDON

Euro-ATAXIA

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LUXEMBOURG

LUXEMBOURG

LUXEMBOURG

Alzheimer Europe

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UNITED KINGDOM

Greater London

LONDON

Alzheimer's Disease International

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