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Patient organisations

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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AUSTRALIA

New South Wales-SYDNEY

ARCAN - Australian Rare Chromosome Awareness Network

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

RaDiOrg - Rare Diseases Belgium - BE

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

STAN Trefpunt VerSTANdelijke Handicap vzw

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUXELLES

AIRG-Belgique - Association pour l'Information et la Recherche sur les maladies Rénales Génétiques A.S.B.L.

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ERN

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

ARRONDISSEMENT BRUSSELS-CAPITAL-EVERE

INCLUSION A.S.B.L.

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BELGIUM

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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CANADA

Ontario-TORONTO

Foundation Fighting Blindness - La fondation qui lutte contre la cécité

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CANADA

Québec-GREENFIELD PARK

AQPEHV - Association québécoise des parents d'enfants handicapés visuels

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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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DENMARK

Sjælland-VFRLXSE

UniqueDenmark

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FINLAND

Finland-HELSINKI

Näkövammaisten liitto ry

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FINLAND

Finland-TAMPERE

Kehitysvammaisten Tukiliitto

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FRANCE

AUVERGNE-RHONE-ALPES-LYON

Association GÊNIRIS - Aniridie et pathologies rares de l'iris

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ERN

FRANCE

HAUTS-DE-FRANCE-MARCQ EN BAROEUL

ANPEA - Association Nationale des Parents d'Enfants Aveugles

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FRANCE

ILE-DE-FRANCE-ERAGNY SUR OISE

Valentin APAC - Association de Porteurs d'Anomalies Chromosomiques

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FRANCE

ILE-DE-FRANCE-LEVALLOIS-PERRET

Xtraordinaire - Association Nationale des Retards Mentaux liés au chromosome X

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FRANCE

ILE-DE-FRANCE-PARIS

AIRG-France - Association pour l'Information et la recherche sur les maladies Rénales Génétiques

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FRANCE

ILE-DE-FRANCE-PARIS

AVH - Association Valentin Haüy pour le bien des aveugles et des malvoyants

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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-COLOMIERS

Association Retina France

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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-MICHELAU

AWS Aniridie-Wagr e.V.

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GERMANY

Berlin-BERLIN

Deutsche Stiftung für junge Erwachsene mit Krebs

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ERN

GERMANY

Nordrhein-Westfalen-DÜREN

BEBSK - Bundesvereinigung Eltern blinder und sehbehinderter Kinder e.V.

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GERMANY

Nordrhein-Westfalen-DÜSSELDORF

BFS - Bund zur Förderung Sehbehinderter e.V.

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GERMANY

Nordrhein-Westfalen-HOLZWICKEDE

LEONA e.V. - Familienselbsthilfe bei seltenen Chromosomenveränderungen

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GREECE

ATTIKI-ATHENS

HRS - Hellenic Retina Society

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GREECE

ATTIKI-ATHENS

TO MELLON - Association of people with genetic disorders

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IRELAND

County Dublin-DUBLIN

Fighting Blindness

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IRELAND

County Dublin-DUBLIN

Rare Ireland-Family Support Network

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ITALY

LAZIO-ROMA

Associazione Aniridia Italiana

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ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

ITALY

MARCHE-ANCONA

SINCRO - Associazione Sindromi Cromosomiche e Genetiche

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LUXEMBOURG

LUXEMBOURG-CANACH

ADV - Association pour déficients visuels

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NETHERLANDS

Zuid-Holland-ALBLASSERDAM

Chromosome Foundation

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NORWAY

Sørlandet-VENNESLA

Aniridi Norge

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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 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

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

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

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PORTUGAL

SUL-LISBOA

ARP - Associação de Retinopatia de Portugal

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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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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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SERBIA

Serbia-BELGRADE

ZVONCICA - Childhood cancer parent organisation

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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

Cataluña-BARCELONA

AIRG-E - Asociación para la información e investigación sobre enfermedades renales genéticas

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SPAIN

Comunidad Valenciana-VILLAJOYOSA

AHEDYSIA: Asociación Humanitaria de Enfermedades Degenerativas y Síndromes de la Infancia y Adolescencia

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SPAIN

Galicia-A CORUÑA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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SPAIN

Madrid-MADRID

Asociación Acción Visión España

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SPAIN

Madrid-MADRID

AEA - Asociación Española de Aniridia

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SPAIN

Madrid-MADRID

APASCIDE - Asociación Española de Familias de Personas con Sordoceguera

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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-LIDINGÖ

Föräldraföreningen Anonymous

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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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SWEDEN

Region Stockholm-STOCKHOLM

Aniridi Sverige

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SWEDEN

Region Västra Götaland-KÅLLERED

NOC Sverige, Nätverket för ovanliga kromosomavvikelser

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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-ARZIER

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

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SWITZERLAND

Suisse Romande-CHERNEX

AIRG-Suisse Association pour l'Information et la Recherche sur les maladies rénales d'origine Génétique

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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

South Yorkshire-SHEFFIELD

Aniridia Network

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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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UNITED KINGDOM

West Sussex-HAYWARDS HEATH

GDUK- Genetic Disorders UK

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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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