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Patient organisations

ITALY

VENETO-SANT'ANGELO DI PIOVE DI SACCO

NoisyVision

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BELGIUM

WEST-VLAANDEREN-BRUGGE

Anna Timmerman V.Z.W.

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CANADA

Québec-MONTRÉAL

ASUQ - Association du Syndrome de Usher du Québec

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FRANCE

ILE-DE-FRANCE-PARIS

ANPSA - Association Nationale pour les Personnes SourdAveugles

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GERMANY

Nordrhein-Westfalen-BONN

Pro Retina Deutschland e.V.

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ERN

GERMANY

Nordrhein-Westfalen-HERZOGENRATH

Leben mit Usher-Syndrom e.V.

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HUNGARY

Közép-Magyarország-BUDAPEST

AOD - Association of Deafblind

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IRELAND

County Dublin-DUBLIN

Anne Sullivan Centre

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IRELAND

County Dublin-DUBLIN

Usher Syndrome Ireland

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ITALY

LAZIO-ROMA

RETINA LAZIO - Associazione Malattie Degenerative della Retina e Ipovisone - ONLUS

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ITALY

LIGURIA-GENOVA

R.P. Liguria ODV Associazione per la Retinite Pigmentosa e Altre Malattie della Retina

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ITALY

LOMBARDIA-MILANO

Retina Italia - ONLUS

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ITALY

MARCHE-OSIMO

Lega del Filo D'Oro - ONLUS

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ITALY

SICILIA-PALERMO

ARIS - Associazione dei Retinopatici ed Ipovedenti Siciliani

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ITALY

TRENTINO ALTO ADIGE-TRENTO

ANIGESCP - Associazione Nazionale Italiana Genitori di Sordociechi Pluriminorati

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NORWAY

Řstlandet-OSLO

Landsforbundet for kombinert syns- og hřrselshemmede/dřvblinde

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PORTUGAL

SUL-LISBOA

ARP - Associaçăo de Retinopatia de Portugal

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UNITED KINGDOM

Buckinghamshire-BUCKINGHAM

Retina UK

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UNITED KINGDOM

Cambridgeshire-PETERBOROUGH

Deafblind UK

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UNITED KINGDOM

Greater London-LONDON

Sense (for deafblind people)

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UNITED STATES

Massachusetts-MAYNARD

Usher Syndrome Coalition

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FINLAND

Finland-HELSINKI

Suomen Kuurosokeat ry

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SPAIN

Madrid-MADRID

FARPE - Federación de Asociaciones de Retinosis Pigmentaria de Espańa

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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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CZECH REPUBLIC

Capital City Prague-PRAHA

CUN - Ceska unie neslysiscich

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FINLAND

Finland-HELSINKI

Kuuloliitto, Harvinaistoiminta

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FRANCE

ILE-DE-FRANCE-PARIS

Fédération ANPEDA - Association Nationale des Parents d'Enfants Déficients Auditifs

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GERMANY

Schleswig-Holstein-RENDSBURG

Deutsche Gesellschaft der Hörgeschädigten - Selbsthilfe und Fachverbände e.V.

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NETHERLANDS

Utrecht-HOUTEN

Stichting Hoormij / NVVS

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POLAND

Wroclaw-WROCLAW

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

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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

Castilla - León-TROBAJO DEL CAMINO

ADERLE: Asociación de Enfermedades Raras de León

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SPAIN

Galicia-A CORUŃA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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SPAIN

Madrid-MADRID

APASCIDE - Asociación Espańola de Familias de Personas con Sordoceguera

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SPAIN

Madrid-MADRID

ASOCIDE - Asociación de Sordociegos de Espańa

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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

SWEDEN

Region Stockholm-STOCKHOLM

Hörselskadades Riksförbund (HRF)

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SWEDEN

Region Stockholm-SUNDBYBERG

Sveriges dövas riksförbund

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SWEDEN

Region Örebro län-ÖREBRO

Riksförbundet DHB

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AUSTRALIA

New South Wales-ENFIELD

Retina Australia

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AUSTRIA

WIEN-WIEN

Usher Initiative Austria

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BELGIUM

NAMUR-NAMUR

RetinaPigmentosa asbl, association belge francophone de la rétinopathie d'origine génétique

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CANADA

Québec-GREENFIELD PARK

AQPEHV - Association québécoise des parents d'enfants handicapés visuels

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FINLAND

Finland-HELSINKI

Retinitis-yhdistys ry

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FRANCE

OCCITANIE-BESSEGES

IRRP - Association Information Recherche sur la Rétinite Pigmentaire

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FRANCE

OCCITANIE-MONTPELLIER

SOS Rétinite France - Association nationale de lutte contre la cécité, Centre recherche information sur les Dégénérescences Rétiniennes (C.E.D.R.E.)

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HUNGARY

Közép-Magyarország-BUDAPEST

Retina Magyarorszag

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ITALY

TOSCANA-CAMPI BISENZIO

ATRI - Associazione Toscana Retinopatici e Ipovedenti ONLUS

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LITHUANIA

SUDOVIA-KAUNAS

Lietuvos Retinitis Pigmentosa Sajunga

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NORWAY

Řstlandet-OSLO

Retinitis Pigmentosa Foreningen i Norge

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POLAND

Warszawa-WARSAW

Stowarzyszenie Retina AMD Polska

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SPAIN

Asturias-GIJÓN

Asociación Es Retina Asturias (ámbito nacional)

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SPAIN

Galicia-ORENSE

Asociación Anasbabi Ciliopatías

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SPAIN

Madrid-MADRID

Fundación Retina Espańa

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SPAIN

Madrid-TORRELODONES

D.O.C.E. Discapacitados Otros Ciegos de Espańa

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SWEDEN

Region Stockholm-STOCKHOLM

Svenska RP-Föreningen

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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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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

NETHERLANDS

Utrecht-UTRECHT

Patiëntengroep Retina

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POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

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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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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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SWITZERLAND

Suisse Alémanique-ZÜRICH

Retina Suisse Die Vereinigung von Patientinnen und Patienten mit Retinitis pigmentosa (RP),Makuladegeneration, Usher-Syndrom und anderen Erkrankungen des Augenhintergrundes

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CANADA

Ontario-TORONTO

Foundation Fighting Blindness - La fondation qui lutte contre la cécité

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FINLAND

Finland-HELSINKI

Näkövammaisten liitto ry

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FRANCE

HAUTS-DE-FRANCE-MARCQ EN BAROEUL

ANPEA - Association Nationale des Parents d'Enfants Aveugles

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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

OCCITANIE-COLOMIERS

Association Retina France

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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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GREECE

ATTIKI-ATHENS

HRS - Hellenic Retina Society

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IRELAND

County Dublin-DUBLIN

Fighting Blindness

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LUXEMBOURG

LUXEMBOURG-CANACH

ADV - Association pour déficients visuels

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SPAIN

Madrid-MADRID

Asociación Acción Visión Espańa

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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

Cataluńa

BARCELONA

FECAMM - Federació Catalana de Malalties Minoritaries

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SPAIN

Madrid

MADRID

FIAPAS: Confederación Espańola de Familias de Personas Sordas

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SPAIN

Madrid

MADRID

FEDER: Federación Espańola 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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SWITZERLAND

Suisse Alémanique

ZÜRICH

Retina International Network

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