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Patient organisations

AUSTRIA

NIEDERÖSTERREICH-EIBESBRUNN

Klinefelter Syndrom Gruppe Selbsthilfe Österreich Ost

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AUSTRIA

OBERÖSTERREICH-ST. MARIEN

BKMF Österreich - Bundesverband kleinwüchsiger Menschen und ihrer Familien

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AUSTRIA

SALZBURG-HALLEIN

Klinefelter Syndrom Österreich

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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

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-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

NORMANDIE-BAGNOLES DE L'ORNE

Association MAIA

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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-MÜNCHEN

47xxy Klinefelter Syndrom e.V.

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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-STELLE/ASHAUSEN

XXYY-Syndrom Selbsthilfe Deutschland

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GERMANY

Sachsen-SEELITZ

DKSV - Deutsche Klinefelter-Syndrom Vereinigung e.V.

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HUNGARY

Közép-Magyarország-BUDAPEST

DKT - Dávid Kisemberek Társasága

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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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NETHERLANDS

Noord-Holland-AMSTERDAM

DSDNederland

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NETHERLANDS

Utrecht-AMERSFOORT

NKV - Nederlandse Klinefelter Vereniging

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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-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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UNITED KINGDOM

Strathclyde-WEST DUNBARTONSHIRE

TSSS - Turner Syndrome Support Society

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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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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

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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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

AUSTRALIA

New South Wales-ARTARMON

Variety - the Children's Charity

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AUSTRALIA

New South Wales-DARLINGHURST

Genetic Alliance Australia

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AUSTRALIA

New South Wales-GLADESVILLE

AWCH - Association for the Wellbeing of Children in Healthcare

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AUSTRALIA

Victoria-PARKVILLE

GSNV - Genetic Support Network of Victoria

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CYPRUS

Cyprus-NICOSIE

Pancyprian Association For Rare Genetic Diseases « Unique Smiles »

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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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ROMANIA

SALAJ-ZALAU

Centrul de Informare pentru Boli Genetice Rare - Centre for Information about Rare Genetic Disorders

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SLOVAKIA

Presovsky kraj-BARDEJOV

ZOGO - Zdruzenie Ojedlinelych Genetickych Ochorenie

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SWITZERLAND

Suisse Alémanique-USTER

KMSK - Förderverein für Kinder mit seltenen Krankheiten

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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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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-EPSOM

Gene People

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UNITED KINGDOM

Surrey-OXTED

Unique - The Rare Chromosome Disorder Support Group

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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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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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