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Patient organisations

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

RaDiOrg - Rare Diseases Belgium - BE

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BELGIUM

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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CANADA

Colombie-Britannique-VANCOUVER

Rare Disease Foundation

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CANADA

Ontario-TORONTO

AboutFace

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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 ŕ Saint-Pierre-et-Miquelon

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GREECE

ATTIKI-ATHENS

"95" - Rare Alliance Greece

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MALTA

MALTA-VALLETTA

The National Alliance for Rare Diseases Support - Malta

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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

INDEPF: Instituto de Investigación y Desarrollo Social de Enfermedades Poco Frecuentes

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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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FRANCE

BOURGOGNE-FRANCHE-COMTE-QUARRÉ-LES-TOMBES

Association MAS-FD - Vaincre la Dysplasie fibreuse et le syndrome de McCune-Albright

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FRANCE

BOURGOGNE-FRANCHE-COMTE-TRESILLEY

Association EndoFrance

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FRANCE

NORMANDIE-BAGNOLES DE L'ORNE

Association MAIA

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FRANCE

PAYS DE LA LOIRE-LA ROCHE SUR YON

ASSYMCAL - Association des Malades du Syndrome de McCune-Albright et de dysplasie fibreuse des os

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GERMANY

Baden-Württemberg-TÜBINGEN

Neovagina Tübingen

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ITALY

EMILIA ROMAGNA-FORLĚ

AMAR - Associazione Malattie Autoimmuni Rare ODV

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ITALY

PIEMONTE-CARIGNANO

EAMAS - European Association Friends of McCune-Albright Syndrome

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NETHERLANDS

Noord-Holland-NAARDEN

IPBF - International Painful Bladder Foundation

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NETHERLANDS

Utrecht-UTRECHT

NVLE - Nationale Vereniging voor Mensen met Lupus, APS, Sclerodermie en MCTD

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NORTH MACEDONIA

NORTH MACEDONIA-PRILEP

SLAP - Save Liver Association of Patients

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ERN

SPAIN

Madrid-MADRID

APACOR - Asociación de Pacientes Coronarios

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SPAIN

País Vasco-BERGARA

Asociación de Displasia Fibrosa

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AUSTRIA

OBERÖSTERREICH-ST. MARIEN

BKMF Österreich - Bundesverband kleinwüchsiger Menschen und ihrer Familien

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AUSTRIA

WIEN-WIEN

ÖTSI - Österreichische Turner-Syndrom Initiative

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-ANDERLECHT

Turnerkontakt vzw

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FINLAND

Finland-HELSINKI

Suomen Turner-yhdistys ry - Finland's Turner förening rf

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FRANCE

AUVERGNE-RHONE-ALPES-LYON

D.E.S IS IT - Association de défense des victimes du Distilbčne

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FRANCE

AUVERGNE-RHONE-ALPES-LYON

FRAGILE X France - Le Goëland

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FRANCE

HAUTS-DE-FRANCE-FACHES THUMESNIL

Association 'Turner et Vous'

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FRANCE

ILE-DE-FRANCE-ASNIERES

AG - Association Grandir : Association de parents d'enfants ayant des problčmes de croissance

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ERN

FRANCE

ILE-DE-FRANCE-LE-PLESSIS-TREVISE

ASBH - Association Nationale Spina Bifida et Handicaps associés

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FRANCE

ILE-DE-FRANCE-PARIS

AGAT - Association des Groupes Amitié Turner

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FRANCE

ILE-DE-FRANCE-PARIS

APPT - Association des Personnes de Petite Taille

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FRANCE

NOUVELLE AQUITAINE-MONT DE MARSAN

Réseau D.E.S France

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FRANCE

OCCITANIE-NÎMES

APASC - Association des Personnes Atteintes du Syndrome de Currarino

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GERMANY

Bremen-BREMEN

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

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ERN

GERMANY

Hessen-DORNBURG

Turner-Syndrom-Vereinigung Deutschland e. V.

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GERMANY

Hessen-WIESBADEN

Bundesverband zur Begleitung von Familien vorgeburtlich erkrankter Kinder e.V.

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GERMANY

Niedersachsen-ALGERMISSEN

VKM - Bundesselbsthilfeverband Kleinwüchsiger Menschen e.V.

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GERMANY

Niedersachsen-LÜNEBURG

ASIG - Asherman Syndrom Interessengemeinschaft

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HUNGARY

Közép-Magyarország-BUDAPEST

DKT - Dávid Kisemberek Társasága

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IRELAND

County Kildare-KILCOCK

Irish Fragile X Society - IFXS

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IRELAND

County Kildare-NAAS

Turner Contact Group Ireland

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ITALY

PIEMONTE-TORINO

APADEST - Associazione Piemontese Amici della Sindrome di Turner

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ITALY

SICILIA-PALERMO

ASKIS - Associazione Sindrome Klinefelter Italiana Sicilia ODV ETS

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NORWAY

Řstlandet-BAGN

Turner Syndrom Foreningen i Norge

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POLAND

Poznan-POZNAN

Wielkopolskie Stowarzyszenie Wsparcia w Zespole Turnera

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POLAND

Warszawa-WARSAW

Stowarzyszenie Pomocy Chorym z Zespolem Turnera

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ROMANIA

ALBA-AIUD

SAPA - Sindicatul Asistentul Personal AIUD

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SPAIN

Andalucía-CÁDIZ

AESAFandalucia - Asociación de Enfermas de Asherman-Fritz

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SPAIN

Andalucía-TORREMOLINOS

Asociación de Síndrome de Turner de Andalucía

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SPAIN

Castilla - León-LEÓN

ALER: Asociación Leonesa de Enfermedades Raras y sin diagnóstico

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SPAIN

Castilla - León-SALAMANCA

Asociación Síndrome de Turner "Alejandra Salamanca"

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SPAIN

Cataluńa-BARCELONA

AST - Asociación de Síndrome de Turner de Cataluńa

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SPAIN

Madrid-MADRID

Asociación Síndrome de Turner de Madrid

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SPAIN

Murcia-MURCIA

Crecer: Asociación Nacional para Problemas de Crecimiento

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SWEDEN

Region Västmanland-VÄSTERĹS

Svenska Turnerföreningen

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SWITZERLAND

Suisse Alémanique-BASEL

VKM - Verein Kleinwüchsiger Menschen der Schweiz

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SWITZERLAND

Suisse Alémanique-WAEDENSWIL

TS-Turner Syndrom - Selbsthilfegruppe Turner - Syndrom Schweiz

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SWITZERLAND

Suisse Romande-CULLY

ARPPT - Association Romande des Personnes de Petite Taille

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SWITZERLAND

Suisse Romande-LAUSANNE

FRAXAS Verein Fragiles - X Schweiz - Association X Fragile Suisse - Associazione X Fragile Svizzera - Associaziun X Fragil Svizra

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UNITED KINGDOM

Strathclyde-WEST DUNBARTONSHIRE

TSSS - Turner Syndrome Support Society

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AUSTRIA

SALZBURG-SALZBURG

PWS-AUSTRIA - Österreichische Gesellschaft Prader-Willi Syndrom

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BELGIUM

BRABANT WALLON-OTTIGNIES

MRKH.be (België - Belgique - Belgium)

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BELGIUM

WEST-VLAANDEREN-KNOKKE-HEIST

Prader-Willi Vlaanderen (P.W.V.) vzw

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BULGARIA

 South-West region-SOFIA

BAPWS - BULGARIAN ASSOCIATION PRADER-WILLI SYNDROME

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CANADA

Québec-GREENFIELD PARK

AQPEHV - Association québécoise des parents d'enfants handicapés visuels

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CYPRUS

Cyprus-LIMASSOL

TF - Theotokos Foundation

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CZECH REPUBLIC

Capital City Prague-PRAHA

OSPWS - Obcanske sdruzeni pro Prader-Willi syndrom

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DENMARK

Sjćlland-HOLBAEK

Landsforeningen for Prader-Willi Syndrom Denmark

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ESTONIA

Tartu-OTEPÄÄ

Eesti Prader Willi Sündroomi Ühing

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FINLAND

Finland-HELSINKI

Suomen PWS-yhdistys ry

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FINLAND

Finland-TAMPERE

Aivolisäke-potilasyhdistys Sella ry

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FRANCE

AUVERGNE-RHONE-ALPES-SAINTE-UZE

Association Bardet-Biedl

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FRANCE

AUVERGNE-RHONE-ALPES-SASSENAGE

Association C.H.A.R.G.E.

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FRANCE

BRETAGNE-RENNES

Association Surrénales

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FRANCE

CENTRE-VAL DE LOIRE-VINEUIL

Association Prader-Willi France

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FRANCE

ILE-DE-FRANCE-CESSON

ASP - Association Syndrome de Poland

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FRANCE

ILE-DE-FRANCE-PARIS

ANPSA - Association Nationale pour les Personnes SourdAveugles

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GERMANY

Baden-Württemberg-STEINHEIM AN DER MURR

Selbsthilfegruppe für das Poland-Syndrom

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GERMANY

Bayern-EMSKIRCHEN

CHARGE Syndrom e.V.

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GERMANY

Nordrhein-Westfalen-BONN

Pro Retina Deutschland e.V.

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ERN

GERMANY

Nordrhein-Westfalen-KÖLN

Prader-Willi-Syndrom Vereinigung Deutschland e.V.

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GERMANY

Rheinland-Pfalz-MAINZ

Bundesverband Niere e.V.

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IRELAND

County Dublin-DUBLIN

Anne Sullivan Centre

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IRELAND

County Dublin-DUBLIN

BBSUK- Bardet Biedl UK- Irish Contact Point

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IRELAND

County Dublin-DUBLIN

PWSAI - Prader-Willi Syndrome Association of Ireland

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IRELAND

County Dublin-DUBLIN

Fighting Blindness

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ITALY

LAZIO-ROMA

AIAS - Associazione Italiana per l'Assistenza agli Spastici - ONLUS

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ITALY

LAZIO-ROMA

Federazione Italiana Prader-Willi ODV

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ITALY

LIGURIA-GENOVA

AISP - Associazione Italiana Sindrome di Poland ODV

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ITALY

LIGURIA-GENOVA

Fondazione CEPIM 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-CARNATE

ASBBI - Associazione Sindrome Bardet-Biedl Italia Aps

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ITALY

LOMBARDIA-MILANO

Il giardino di Aurora

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ITALY

LOMBARDIA-RESCALDINA

Mondo Charge

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ITALY

MARCHE-OSIMO

Lega del Filo D'Oro - ONLUS

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ITALY

PUGLIA-ALTAMURA

A.MA.R.A.M. - Associazione Malattie Rare dell'Alta Murgia APS/ETS

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ITALY

VENETO-MESTRE

AIPAd - Associazione Italiana Pazienti Addison

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NETHERLANDS

Flevoland-ALMERE

Stichting TAPS Support

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NETHERLANDS

Gelderland-NIJKERK

Stichting Patiëntenorganisatie Prader-Willi Syndroom Nederland

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NETHERLANDS

Overijssel-ZWOLLE

VKS - Volwassenen, Kinderen en Stofwisselingsziekten

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NORWAY

Řstlandet-BIRI

Foreningen for Bardet-Biedl Syndrom

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NORWAY

Řstlandet-OSLO

Landsforbundet for kombinert syns- og hřrselshemmede/dřvblinde

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NORWAY

Řstlandet-VETTRE

Landsforeningen for Prader-Willis syndrom

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POLAND

Warszawa-WARSAW

Polskie Stowarzyszenie Pomocy Osobom z Zespolem Pradera-Williego

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POLAND

Wroclaw-WROCLAW

Fundacja Potrafie Pomoc

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PORTUGAL

SUL-LISBOA

ARP - Associaçăo de Retinopatia de Portugal

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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

SALAJ-ZALAU

RPWA - Asociatia Prader Willi din Romania

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SPAIN

Baleares-PALMA DE MALLORCA

ABAIMAR: Associació Balear d'Infants amb Malalties Rares

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SPAIN

Cataluńa-TERRASSA

Asociación Charge Espańa

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SPAIN

Comunidad Valenciana-ELCHE

AER-ELX: Asociación Enfermedades Raras Elche

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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-ALCALÁ DE HENARES

Asociación Espańola Síndrome CHARGE

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SPAIN

Madrid-LEGANÉS

AESPW - Asociación Espańola para el Síndrome de Prader-Willi

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SPAIN

Madrid-MADRID

AESIP: Asociación Espańola del Síndrome de Poland

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SWEDEN

Region Skĺne-MALMÖ

Prader-Willi föreningen i Sverige

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SWEDEN

Region Sörmland-ÄRLA

Kraniofaciala föreningen i Sverige

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SWEDEN

Region Västra Götaland-BORĹS

Svenska PS-Föreningen

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SWITZERLAND

Suisse Alémanique-BERN

SHG-Wegweiser - Schweizer Selbsthilfegruppe für Krankheiten der Hypophyse und/oder Nebennieren

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SWITZERLAND

Suisse Alémanique-GRABSERBERG

PWS - Prader-Willi Vereinigung Schweiz

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UNITED KINGDOM

Avon-BRISTOL

The Pituitary Foundation

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UNITED KINGDOM

Buckinghamshire-BUCKINGHAM

Retina UK

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UNITED KINGDOM

Cambridgeshire-PETERBOROUGH

Facial Palsy UK

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UNITED KINGDOM

Cheshire-ASHTON-UNDER-LYNE

PIP-UK

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UNITED KINGDOM

Derbyshire-DERBY

PWSA (UK) - Prader-Willi Syndrome Association (UK)

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UNITED KINGDOM

Greater London-LONDON

Sense (for deafblind people)

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UNITED KINGDOM

Greater Manchester-SALE

CHARGE Family Support Group

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UNITED KINGDOM

Kent-TUNBRIDGE WELLS

BBS UK- Bardet-Biedl Society UK

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FRANCE

ILE-DE-FRANCE-PARIS

MRKH - Association Syndrome de Rokitansky

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ITALY

ABRUZZO-TERAMO

ANIMrkhS - Associazione Nazionale Italiana Sindrome Mayer Rokitansky Kuster Hauser ONLUS

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NETHERLANDS

Zuid-Holland-ROTTERDAM

Stichting MRK-Vrouwen

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SPAIN

Madrid-LAS ROZAS

AESYS: Asociación Espańola del Síndrome Schaaf-Yang

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Alliances and umbrella organisations

AUSTRIA

WIEN

WIEN

Pro Rare Austria - Allianz für seltene Erkrankungen

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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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BULGARIA

 South-West region

SOFIA

NAPRD: National Alliance of People with Rare Diseases

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CANADA

Ontario

TORONTO

CORD - Canadian Organization for Rare Disorders

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CROATIA

CROATIA

ZAGREB

Hrvatski savez za rijetke bolesti

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CYPRUS

Cyprus

NICOSIA

Cyprus Alliance for Rare Disorders

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DENMARK

Hovedstaden

TAASTRUP

Rare Disorders Denmark

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FINLAND

Finland

HELSINKI

Harvinaiset-verkosto

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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
FRANCE

ILE-DE-FRANCE

SAINT-MICHEL-SUR-ORGE

SOLHAND - Solidarité Handicap ''autour des maladies rares''

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GERMANY

Berlin

BERLIN

ACHSE - Allianz Chronischer Seltener Erkrankungen e.V.

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GREECE

ATTIKI

ATHENS

PESPA - Greek Alliance for Rare Disease Network

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HUNGARY

Közép-Magyarország

BUDAPEST

HUFERDIS - RIROSZ - Hungarian Federation of People with Rare and Congenital Diseases

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IRELAND

County Dublin

DUBLIN

IPPOSI - The Irish Platform for Patient Organisations, Science and Industry

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ITALY

PIEMONTE

TORINO

Federazione Malattie Rare Infantili

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LATVIA

LATVIA

RIGA

Latvian Alliance for Rare Diseases

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NETHERLANDS

Utrecht

SOEST

VSOP - Vereniging Samenwerkende Ouder- en Patiëntenorganisaties

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POLAND

Warszawa

WARSAW

ORPHAN - Krajowe Forum na rzecz terapii chorób rzadkich

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PORTUGAL

SUL

LISBOA

Fedra - Federaçăo de Doenças Raras de Portugal

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PORTUGAL

SUL

LISBOA

RD-Portugal - Uniăo das Associaçőes das Doenças Raras de Portugal,

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ROMANIA

SALAJ

ZALAU

RONARD - Alianta Nationala Pentru Boli Rare Romania Network

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SERBIA

Serbia

BELGRADE

NORBS - Nacionalna organizacija za retke bolesti Srbije

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SLOVAKIA

Bratislavsky kraj

PEZINOK

Slovenska aliancia zriedkavych chorob

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SPAIN

Cataluńa

BARCELONA

FECAMM - Federació Catalana de Malalties Minoritaries

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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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UNITED KINGDOM

Greater London

LONDON

Contact - For families with disabled children

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UNITED KINGDOM

Greater London

LONDON

GA UK : Genetic Alliance UK

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UNITED KINGDOM

Greater London

LONDON

RDUK : Rare Disease UK

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UNITED KINGDOM

Greater London

LONDON

SHCA - Specialised Health Care Alliance

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GERMANY

Mecklenburg-Vorpommern

ROSTOCK

EFXN Fragile X : Das Europäische Netzwerk der Fragiles X Vereine

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UNITED KINGDOM

Cambridgeshire

CAMBRIDGE

IPWSO - International Prader-Willi Syndrome Organisation

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