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Patient organisations

CANADA

Ontario-TORONTO

Foundation Fighting Blindness - La fondation qui lutte contre la cécité

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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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GREECE

ATTIKI-ATHENS

HRS - Hellenic Retina Society

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PORTUGAL

SUL-LISBOA

ARP - Associação de Retinopatia de Portugal

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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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CANADA

Québec-GREENFIELD PARK

AQPEHV - Association québécoise des parents d'enfants handicapés visuels

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DENMARK

Jylland-SILKEBORG

The Danish Association for Albinism

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FINLAND

Finland-LEMPÄÄLÄ

Suomen albinismiyhdistys ry

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FRANCE

BRETAGNE-RENNES

Genespoir - Association Française des Albinismes

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FRANCE

PAYS DE LA LOIRE-ANGERS

Association Microphtalmie France

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GERMANY

Baden-Württemberg-STUTTGART

NOAH Albinismus Selbsthilfegruppe e.V.

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GERMANY

Berlin-BERLIN

Bundesverband Auge e.V.

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GERMANY

Nordrhein-Westfalen-DORTMUND

Fachbereich Glaukom-Kinder des Bundesverbandes Glaukom-Selbsthilfe e.V.

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GREECE

ATTIKI-ATHENS

TO MELLON - Association of people with genetic disorders

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ITALY

PIEMONTE-TORINO

Fedra ONLUS

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NETHERLANDS

Utrecht-UTRECHT

Ledengroep Glaucoombelangen

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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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SPAIN

Cataluña-BARCELONA

FECAMM - Federació Catalana de Malalties Minoritaries

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SPAIN

Galicia-EIRÍS DE ARRIBA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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SPAIN

Madrid-ALCALÁ DE HENARES

AGAF - Asociacion de Glaucoma para Afectados y Familiares

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SPAIN

Madrid-TORRELODONES

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

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SPAIN

Murcia-MOLINA DE SEGURA

AMER - Asociación Molinense de Enfermedades Raras

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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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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-ILFORD

Albinism Fellowship

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UNITED KINGDOM

Greater London-LONDON

ARC - Antenatal Results and Choices

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UNITED KINGDOM

Greater London-LONDON

GDUK- Genetic Disorders UK

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UNITED KINGDOM

Greater London-LONDON

MACS (Microphthalmia, Anophthalmia and Coloboma Support)

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UNITED KINGDOM

Greater London-LONDON

Royal Society for Blind Children (RSBC)

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UNITED KINGDOM

Kent-ASHFORD

IGA - International Glaucoma Association

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UNITED KINGDOM

Surrey-OXTED

Unique - The Rare Chromosome Disorder Support Group

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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

Retina Pigmentosa A.S.B.L.

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FINLAND

Finland-HELSINKI

Retinitis-yhdistys ry

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FRANCE

AUVERGNE-RHONE-ALPES-VILLEREST

Association Nos Ailes Froissées

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FRANCE

NOUVELLE AQUITAINE-MARTIGNAS SUR JALLE

CSC - Connaître les Syndromes Cérébelleux

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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

LOMBARDIA-GRANDATE

Albinit

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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

Østlandet-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

Comunidad Valenciana-VALENCIA

ALBA - Asociación de Ayuda a Personas con Albinismo

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SPAIN

Madrid-MADRID

ASOCIDE - Asociación de Sordociegos de España

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SPAIN

Madrid-MADRID

Fundación Retina España

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SWEDEN

Stockholms läns landsting-STOCKHOLM

Svenska RP-Föreningen

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UNITED KINGDOM

Hertfordshire-HARPENDEN

AT Society - Ataxia-Telangiectasia Society

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CYPRUS

Cyprus-LIMASSOL

TF - Theotokos Foundation

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FRANCE

HAUTS-DE-FRANCE-LENS

Association Ouvrir Les Yeux

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FRANCE

ILE-DE-FRANCE-BOULOGNE-BILLANCOURT

AFG - Association France Glaucome

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FRANCE

ILE-DE-FRANCE-BURES SUR YVETTE

AMSN - Association des malades d'un syndrome néphrotique

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FRANCE

ILE-DE-FRANCE-MALAKOFF

Association GÊNIRIS - Aniridie et pathologies rares de l'iris

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FRANCE

ILE-DE-FRANCE-PARIS

PSP France - Association Paralysie Supranucléaire Progressive

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FRANCE

OCCITANIE-SAINT ANDRÉ DE SANGONIS

Association France Choroïdérémie

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GERMANY

Baden-Württemberg-MANNHEIM

Selbsthilfegruppe Morbus Coats

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GERMANY

Bayern-MICHELAU

AWS-ANIRIDIE-WAGR e.V.

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GERMANY

Bremen-BREMEN

BKMF - Bundesverband Kleinwüchsige Menschen und ihre Familien e.V.

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GERMANY

Hessen-BAD NAUHEIM

PSPG - Deutsche PSP-Gesellschaft e.V.

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GERMANY

Niedersachsen-ALGERMISSEN

VKM - Bundesselbsthilfeverband Kleinwüchsiger Menschen e.V.

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GERMANY

Nordrhein-Westfalen-BONN

Pro Retina Deutschland e.V.

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GERMANY

Nordrhein-Westfalen-MECHERNICH

Achalasie-Selbsthilfe e.V.

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IRELAND

County Dublin-DUBLIN

Anne Sullivan Centre

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IRELAND

County Dublin-DUBLIN

PSPA Ireland - PSPAssocation Ireland CLG

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ISRAEL

ISRAEL-HERZLIYA

FD - Israeli Association for Familial Dysautonomia

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ITALY

LAZIO-ROMA

Associazione Aniridia Italiana

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ITALY

LAZIO-ROMA

Associazione Displasia Setto Ottica e Ipoplasia del Nervo Ottico

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ITALY

LAZIO-ROMA

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

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ITALY

LAZIO-ROMA

Cat Eye Syndrome International ONLUS

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ITALY

LIGURIA-GENOVA

Associazione Italiana Sindrome OFCD (oculo-facio-cardio-dentale)

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ITALY

TOSCANA-GROSSETO

A.C.C. - Associazione Cataratta Congenita

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ITALY

VENETO-VALDAGNO

PSP Italia - Associazione Paralisi Sopranucleare Progressiva

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ROMANIA

BUCURESTI-BUCURESTI

APCSR-UNICUL SENS - Asociatia Parintilor copiilor cu surdo-cecitate din Romania

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SPAIN

Baleares-PALMA DE MALLORCA

ABAIMAR - Associació Balear d'Infants amb Malalties Rares

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SPAIN

Castilla - La Mancha-YUNCOS

AFECE - Asociación de Familiares y Enfermos de Coats España

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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

Madrid-MADRID

AEA - Asociación Española de Aniridia

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SWEDEN

Stockholms läns landsting-SOLNA

Aniridi Sverige

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UNITED KINGDOM

Buckinghamshire-BUCKINGHAM

Retina UK

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UNITED KINGDOM

Buckinghamshire-MILTON KEYNES

PSPA- Progressive Supranuclear Palsy Association

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UNITED KINGDOM

Greater London-LONDON

Familial Dysautonomia UK

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UNITED KINGDOM

Lancashire-PRESTON

Gorlin Syndrome Group

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UNITED KINGDOM

South Yorkshire-SHEFFIELD

Aniridia Network

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUXELLES

Fondation Lou - fondation privée

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BELGIUM

LIMBURG-KOERSEL

bindweefsel.be - Vlaamse Vereniging voor Erfelijke Bindweefselaandoeningen V.Z.W.

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BELGIUM

LUXEMBOURG-HEYD (DURBUY)

ASBL Syndrome Moebius Belgique-Moebius Syndroom België VZW

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CANADA

Ontario-TORONTO

Little People of Ontario

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FRANCE

AUVERGNE-RHONE-ALPES-LYON

Réseau-Lucioles

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FRANCE

CENTRE-VAL DE LOIRE-LA RICHE

Association KJER-France

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FRANCE

GRAND-EST-HATTEN

Association Syndrome Moebius France

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FRANCE

ILE-DE-FRANCE-MONTIGNY LES CORMEILLES

Association France Alström

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FRANCE

ILE-DE-FRANCE-PARIS

ANPSA - Association Nationale pour les Personnes SourdAveugles

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FRANCE

ILE-DE-FRANCE-PARIS

APPT - Association des Personnes de Petite Taille

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FRANCE

NOUVELLE AQUITAINE-CIVAUX

Association Câlin Volé

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GERMANY

Niedersachsen-HANNOVER

Moebius Syndrom Deutschland e.V.

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GERMANY

Nordrhein-Westfalen-HENNEF

FOCUS Families Deutschland

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GERMANY

Nordrhein-Westfalen-SCHLOß HOLTE-STUKENBROCK

ABE - Angeborene-Bindegewebs-Erkrankungen e.V.

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ITALY

LOMBARDIA-MUGGIO'

AISMo - Associazione Italiana Sindrome di Moebius - ONLUS

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ITALY

MARCHE-OSIMO

Lega del Filo D'Oro - ONLUS

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NETHERLANDS

Noord-Brabant-TILBURG

Belangenvereniging LOA/LHON

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NETHERLANDS

Utrecht-AMERSFOORT

Belangenvereniging Longfibrosepatiënten Nederland

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NETHERLANDS

Utrecht-UTRECHT

Macula Vereniging

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NETHERLANDS

Zuid-Holland-DORDRECHT

LAPOSA - Landelijke Patiënten- en Oudervereniging voor Schedel- en/of Aangezichtsafwijkingen

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SPAIN

Andalucía-SEVILLA

ASANOL - Asociación atrofia de nervio óptico de Leber

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SPAIN

Castilla - León-LEÓN

ALER - Asociación Leonesa de Enfermedades Raras y sin diagnóstico

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SPAIN

Comunidad Valenciana-LA CAÑADA

Fundación Síndrome de Moebius

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SPAIN

Extremadura-GUAREÑA

AES - Asociación Española de Stickler

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SPAIN

Madrid-MADRID

FARPE - Federación de Asociaciones de Retinosis Pigmentaria de España

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SWEDEN

Landstinget Sörmland-ÄRLA

Kraniofaciala föreningen i Sverige

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SWEDEN

Stockholms läns landsting-HÄSSELBY

Möbius syndromförening i Sverige

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SWITZERLAND

Suisse Alémanique-BERN

Marfan Stiftung Schweiz - Fondation Marfan Suisse - Fondazione Marfan Svizzera

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UNITED KINGDOM

Cambridgeshire-PETERBOROUGH

Facial Palsy UK

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UNITED KINGDOM

Cambridgeshire-PETERBOROUGH

Deafblind UK

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UNITED KINGDOM

Devon-DEVON

ASUK - Alstrom Syndrome UK

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UNITED KINGDOM

Essex-HOCKLEY

Leber's Hereditary Optic Neuropathy Society (aka LHON Society)

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UNITED KINGDOM

Greater London-LONDON

Sense (for deafblind people)

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UNITED KINGDOM

Hampshire-ANDOVER

Macular Society

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UNITED KINGDOM

West Sussex-LITTLEHAMPTON

Stickler Syndrome UK

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BELGIUM

VLAAMS BRABANT-TREMELO

BBOC - Bardet Biedl OuderContactgroep

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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

AUVERGNE-RHONE-ALPES-SAINTE-UZE

Association Bardet-Biedl

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FRANCE

HAUTS-DE-FRANCE-DUNKERQUE

Vis ta Vue

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GERMANY

Bayern-REGENSBURG

BV MD - Bundesverband Macula-Degeneration e.V.

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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 Meath-NAVAN

Little People of Ireland - LPI

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ITALY

EMILIA ROMAGNA-TEVEROLA

AISSt - Associazione Italiana Sindrome di Stargardt

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ITALY

LAZIO-ROMA

Fondazione Famiglie Monocromatismo dei Coni blu - Sede italiana di "BCM Families Foundation"

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ITALY

LOMBARDIA-CARNATE

ASBBI - Associazione Sindrome Bardet-Biedl Italia

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ITALY

LOMBARDIA-MILANO

Retina Italia - ONLUS

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ITALY

LOMBARDIA-MILANO

IALCA - Associazione Italiana Amaurosi Congenita di Leber - 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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ITALY

VENETO-VERONA

AAI - Associazione Acromati Italiani - ONLUS

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NORWAY

Østlandet-BIRI

Foreningen for Bardet-Biedl Syndrom

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SPAIN

Galicia-VIGO

Acrómates - Asociación de afectados por Acromatopsia y Monocromatismo de Conos Azules

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UNITED KINGDOM

Kent-TUNBRIDGE WELLS

BBS UK- Bardet-Biedl Society UK

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UNITED STATES

Massachusetts-MAYNARD

Usher Syndrome Coalition

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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

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

Gloucestershire

DURSLEY

European Gaucher Alliance

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