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Patient organisations

FINLAND

Finland-HELSINKI

AH-Potilaat Ry

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GERMANY

Bayern-MÜNCHEN

SoMA e.V. - Selbsthilfeorganisation für Menschen mit Anorektalfehlbildungen und Morbus Hirschsprung

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NETHERLANDS

Noord-Holland-HUIZEN

VA - Vereniging Anusatresie

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SPAIN

Madrid-DAGANZO DE ARRIBA

Asociación Española de Malformaciones Anorrectales y Enfermedad de Hirschsprung

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ITALY

LAZIO-ROMA

AIMAR - Associazione Italiana Malformazioni Ano-Rettali - ONLUS

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NORWAY

Østlandet-DRAMMEN

Norsk Forening for Analatresi

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AUSTRALIA

South Australia-ERINDALE

AKSAI - Australian Kabuki Syndrome Association Incorporated

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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-CELLES

Association Kabuki Belgium (AKABE)

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CANADA

Saskatchewan-REGINA

Kabuki Syndrome Network

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FRANCE

BRETAGNE-MILIZAC

ASK - Association Syndrome Kabuki

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FRANCE

ILE-DE-FRANCE-LE-PLESSIS-TREVISE

ASBH - Association Nationale Spina Bifida et Handicaps associés

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FRANCE

ILE-DE-FRANCE-MAISONS-ALFORT

AFAO - Association Française de l'atrésie de l'oesophage

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FRANCE

ILE-DE-FRANCE-PARIS

ANPSA - Association Nationale pour les Personnes SourdAveugles

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FRANCE

OCCITANIE-NÎMES

APASC - Association des Personnes Atteintes du Syndrome de Currarino

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FRANCE

PROVENCE-ALPES-COTE D'AZUR-LE TIGNET

AMCVHS - Association Mieux Comprendre et Vivre l'Hydrocéphalie et la Syringomyélie

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GERMANY

Nordrhein-Westfalen-DORTMUND

ASBH - Arbeitsgemeinschaft Spina Bifida und Hydrocephalus e.V.

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ITALY

PUGLIA-ALTAMURA

A.MA.R.A.M. - Associazione Malattie Rare dell'Alta Murgia aps

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ITALY

VENETO-VICENZA

AFaDOC - Associazione Famiglie di Soggetti con Deficit dell'Ormone della Crescita e altre Patologie

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LATVIA

LATVIA-RIGA

Reto slimibu biedriba Caladrius

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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-EIRÍS DE ARRIBA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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SPAIN

Madrid-MADRID

Asociación Española de Familiares y Afectados por Síndrome de Kabuki

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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 Sörmland-ÄRLA

Kraniofaciala föreningen i Sverige

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UNITED KINGDOM

Greater London-LONDON

Sense (for deafblind people)

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UNITED KINGDOM

Nottinghamshire-NOTTINGHAM

TOFS - Tracheo-Oesophageal Fistula Support

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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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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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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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