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Patient organisations

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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SPAIN

Galicia-EIRÍS DE ARRIBA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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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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NETHERLANDS

Noord-Holland-BLARICUM

Stichting RPF Nederland

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FINLAND

Finland-HELSINKI

AH-Potilaat Ry

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GERMANY

Baden-Württemberg-STUTTGART

KEKS - Patienten- und Selbsthilfeorganisation für Kinder und Erwachsene mit kranker Speiseröhre e.V.

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GERMANY

Bayern-MÜNCHEN

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

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MONACO

MONACO-MONACO

MLD- Monaco liver disorder

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NETHERLANDS

Noord-Holland-HUIZEN

VA - Vereniging Anusatresie

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NORWAY

Østlandet-KJELLER

Norsk forening for øsofagusatresi (spiserørsdeffekter)

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NORWAY

Østlandet-OSLO

Leverforeningen

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SPAIN

Madrid-DAGANZO DE ARRIBA

Asociación Española de Malformaciones Anorrectales y Enfermedad de Hirschsprung

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UNITED KINGDOM

Greater London-LONDON

SPARKS - The Children's Medical Research Charity

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AUSTRIA

WIEN-WIEN

Spina Bifida & Hydrocephalus Österreich

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BELGIUM

OOST-VLAANDEREN-EREMBODEGEM

VSH - Vereniging voor Spina Bifida en Hydrocephalus V.Z.W.

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DENMARK

Syddanmark-ARRE

Landsforeningen for Blaereektopi

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FRANCE

AUVERGNE-RHONE-ALPES-BRON

APEX - Accompagnement du Patient Exstrophique

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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-MONTROUGE

APEHDia - Association Pour Encourager la recherche sur la Hernie Diaphragmatique

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FRANCE

PROVENCE-ALPES-COTE D'AZUR-ENTRAIGUES

Association Les amis de Rémi

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GERMANY

Nordrhein-Westfalen-DORTMUND

ASBH - Arbeitsgemeinschaft Spina Bifida und Hydrocephalus e.V.

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GERMANY

Nordrhein-Westfalen-KREFELD

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

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GERMANY

Rheinland-Pfalz-LOHNSFELD

Zwerchfellhernie bei Neugeborenen - CHD e.V.

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GERMANY

Sachsen-FREITAL

Selbsthilfegruppe Blasenekstrophie / Epispadie e.V.

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IRELAND

County Dublin-CLONDALKIN

Spina Bifida Hydrocephalus Ireland

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ITALY

LAZIO-ROMA

AIMAR - Associazione Italiana Malformazioni Ano-Rettali - ONLUS

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ITALY

LAZIO-TREVIGNANO ROMANO

FaBED - Famiglie di Bambini con Ernia Diaframmatica

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ITALY

LOMBARDIA-MILANO

ASM - Associazione Italiana per lo Studio delle Malformazioni - ONLUS

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ITALY

LOMBARDIA-MILANO

Il giardino di Aurora

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ITALY

TOSCANA-COLOMBANO - CAPANNORI

AEV - Associazione Italiana Estrofia Vescicale - Epispadia Odv

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NETHERLANDS

Gelderland-ARNHEM

Platform Congenitale Hernia Diafragmatica

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NORWAY

Østlandet-DRAMMEN

Norsk Forening for Analatresi

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PORTUGAL

SUL-LISBOA

ASBIHP - Associação Spina Bifida e Hidrocefalia de Portugal

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SPAIN

Extremadura-VALDECALZADA

La Vida con Hernia Diafragmática Congénita

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SPAIN

Madrid-MADRID

ASAFEX - Asociación de personas y familias afectadas de extrofia vesical, cloacal, epispadias y patologías afines

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SPAIN

Madrid-MADRID

ASEXVE - Asociación Española de Extrofia Vesical

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SWITZERLAND

Suisse Alémanique-ST. GALLEN

EXTRO - Vereinigung Blasenexstrophie - Association Exstrophie Vésicale - Associazione Estrofia Vesicale

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SWITZERLAND

Suisse Alémanique-TAGELSWANGEN

SBH Schweiz - Schweizerische Vereinigung zugunsten von Personen mit SPINA BIFIDA UND HYDROCEPHALUS

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UNITED KINGDOM

Norfolk-KINGS LYNN

CDH UK - The Congenital Diaphragmatic Hernia Charity

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AUSTRIA

OBERÖSTERREICH-SIPBACHZELL

Patienten- und Selbsthilfeorganisation für Kinder und Erwachsene mit kranker Speiseröhre (KEKS) Österreich

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BELGIUM

NAMUR-WARET LA CHAUSSÉE

ABeFAO-Association Belge des Familles Touchées par l'Atrésie de l'Oesophage / Belgische Vereniging voor Families Getroffen door Slokdarmatresie

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FRANCE

ILE-DE-FRANCE-MAISONS-ALFORT

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

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FRANCE

OCCITANIE-NÎMES

APASC - Association des Personnes Atteintes du Syndrome de Currarino

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GERMANY

Nordrhein-Westfalen-MECHERNICH

Achalasie-Selbsthilfe e.V.

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ITALY

LAZIO-ROMA

Associazione Famiglie di pazienti con Atresia Esofagea

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ITALY

PUGLIA-ALTAMURA

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

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NETHERLANDS

Gelderland-LICHTENVOORDE

VOKS - Vereniging voor Ouderen en Kinderen met Slokdarmafsluiting

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SWITZERLAND

Suisse Alémanique-ST. GALLEN

OA Switzerland - Schweizerische Hilfsorganisation für Kinder und Erwachsene mit kranker Speiseröhre

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UNITED KINGDOM

Nottinghamshire-NOTTINGHAM

TOFS - Tracheo-Oesophageal Fistula Support

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BELGIUM

VLAAMS BRABANT-TREMELO

BBOC - Bardet Biedl OuderContactgroep

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FRANCE

AUVERGNE-RHONE-ALPES-SAINTE-UZE

Association Bardet-Biedl

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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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ITALY

EMILIA ROMAGNA-ALBINEA

AIMW - Associazione Italiana Mowat Wilson Onlus

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ITALY

LOMBARDIA-CARNATE

ASBBI - Associazione Sindrome Bardet-Biedl Italia

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ITALY

MARCHE-OSIMO

Lega del Filo D'Oro - ONLUS

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NETHERLANDS

Noord-Holland-HOOFDDORP

Oudergroep Mowat Wilson Syndroom

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NORWAY

Østlandet-BIRI

Foreningen for Bardet-Biedl Syndrom

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PORTUGAL

SUL-LISBOA

ARP - Associação de Retinopatia de Portugal

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UNITED KINGDOM

Buckinghamshire-BUCKINGHAM

Retina UK

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UNITED KINGDOM

Greater London-LONDON

Sense (for deafblind people)

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UNITED KINGDOM

Kent-TUNBRIDGE WELLS

BBS UK- Bardet-Biedl Society 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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GERMANY

Baden-Württemberg

STUTTGART

EAT - Federation of Esophageal Atresia and Tracheo-Esophageal Fistula

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