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Patient organisations

AUSTRALIA

New South Wales-FIVE DOCK

CTF - Children's Tumour Foundation, NF Australia Ltd (Neurofibromatosis)

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AUSTRIA

WIEN-WIEN

NF Kinder - Verein zur Förderung der Neurofibromatoseforschung Österreich

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BELGIUM

BRABANT WALLON-LIMELETTE

Association Neurofibromatose Belgique (ANB) ASBL

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BELGIUM

OOST-VLAANDEREN-SINT-NIKLAAS

NF Kontakt - Vereniging voor patiënten met neurofibromatose vzw

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CANADA

Québec-MONTRÉAL

ANFQ - Association de la Neurofibromatose du Québec

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DENMARK

Jylland-HERNING

Danish Association for Neurofibromatosis Recklinghausen

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FINLAND

Finland-KEMI

Suomen Neurofibromatoosiyhdistys ry.

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FRANCE

HAUTS-DE-FRANCE-NEUVILLE-EN-FERRAIN

ANR - Association Neurofibromatoses et Recklinghausen

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FRANCE

NOUVELLE AQUITAINE-ANAIS

LFCN - Ligue Française Contre les Neurofibromatoses

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FRANCE

OCCITANIE-MONTPELLIER

Association Kokcinelo

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GERMANY

Hamburg-HAMBURG

Bundesverband Neurofibromatose e.V.

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HUNGARY

Közép-Magyarország-BUDAPEST

NF Hungary

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IRELAND

County Dublin-DUBLIN

NF Ireland - Neurofibromatosis Association of Ireland

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ITALY

EMILIA ROMAGNA-BOLOGNA

Associazione "Io Ci Sono" ONLUS

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ITALY

EMILIA ROMAGNA-PARMA

ANF - Associazione Neuro Fibromatosi - ONLUS

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ITALY

LAZIO-ROMA

ANANas - Associazione Nazionale Aiuto per la Neurofibromatosi, amicizia e solidarietŕ

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ITALY

VENETO-PADOVA

LINFA OdV - Associazione Lottiamo Insieme contro la Neurofibromatosi - ONLUS

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NETHERLANDS

Zuid-Holland-DEN HAAG

NFVN - Neurofibromatose Vereniging Nederland

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NORWAY

Trřndelag-NORDDYRŘY

Norsk Forening for Nevrofibromatose

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POLAND

Bydgoszcz-BYDGOSZCZ

Alba-Julia - Stowarzyszenie pacjentów z choroba Recklinghausena i innymi schorzeniami z grupy fakomatoz

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PORTUGAL

SUL-RAMADA

APNF - Associaçăo Portuguesa de Neurofibromatose

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SPAIN

Baleares-PALMA DE MALLORCA

ABAIMAR: Associació Balear d'Infants amb Malalties Rares

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SPAIN

Cantabria-PUENTE SAN MIGUEL

FEDERAS - Federación Espańola Síndrome de Noonan y otras Rasopatías

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SPAIN

Castilla - León-LEÓN

ALER - Asociación Leonesa de Enfermedades Raras y sin diagnóstico

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SPAIN

Madrid-MADRID

AANF: Asociación de Afectados de Neurofibromatosis

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SWEDEN

Region Sörmland-ÄRLA

Kraniofaciala föreningen i Sverige

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SWEDEN

Region Västmanland-SALA

NF-förbundet i Sverige

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SWITZERLAND

Suisse Alémanique-SEEWEN

SNFV - Schweizerische Neurofibromatose - Vereinigung

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SWITZERLAND

Suisse Romande-GRAND-SACONNEX

GER-NF - Groupe d'Entraide Romand pour les Neurofibromatoses

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TURKEY

TURKEY-ISTANBUL

Neurofibromatosis (NF) Dernegi

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UNITED KINGDOM

East Sussex-WINCHELSEA BEACH

Childhood Tumour Trust

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UNITED KINGDOM

Greater London-LONDON

Nerve Tumours UK

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GERMANY

Berlin-BERLIN

Deutsche Stiftung für junge Erwachsene mit Krebs

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ERN

SWITZERLAND

Suisse Alémanique-BASEL

VKM - Verein Kleinwüchsiger Menschen der Schweiz

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SWITZERLAND

Suisse Romande-CULLY

ARPPT - Association Romande des Personnes de Petite Taille

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UNITED KINGDOM

Derbyshire-ALFRETON

FDSS UK - Fibrous Dysplasia Support Society

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AUSTRALIA

New South Wales-BOWRAL

RCA - Rare Cancers Australia Limited

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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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AUSTRIA

NIEDERÖSTERREICH-HEILIGENKREUZ

Epilepsie Dachverband Österreich

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSEL

Fondation contre le Cancer / Stichting tegen Kanker

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

RaDiOrg - Rare Diseases Belgium - BE

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUXELLES

AIRG-Belgique - Association pour l'Information et la Recherche sur les maladies Rénales Génétiques A.S.B.L.

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ERN

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUXELLES

LFBE - La Ligue francophone belge contre l'Epilepsie ASBL

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUXELLES

SUN CHILD - Prendre un enfant par la main A.S.B.L.

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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-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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BELGIUM

OOST-VLAANDEREN-EVERGEM

Epilepsie-contactgroep IKAROS V.Z.W. [Contactgroep Oost-Vlaanderen]

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BELGIUM

OOST-VLAANDEREN-GENT

Epilepsie Liga V.Z.W.

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BELGIUM

VLAAMS BRABANT-DILBEEK

Steunpunt Kinderepilepsie V.Z.W.

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BELGIUM

VLAAMS BRABANT-HALLE

KIKOV-Leuven - Kinderkanker Oudervereniging Leuven vzw

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BELGIUM

WEST-VLAANDEREN-KORTRIJK

URANUS - Contactgroep voor mensen met epilepsie [Contactgroep West-Vlaanderen]

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CANADA

Ontario-TORONTO

Foundation Fighting Blindness - La fondation qui lutte contre la cécité

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CANADA

Terre-Neuve-et-Labrador-ST. JOHN'S

CEA - Canadian Epilepsy Alliance

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CYPRUS

Cyprus-NICOSIA

Cyprus Association for Children with Cancer and Related Diseases "One Dream One Wish"

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CYPRUS

Cyprus-NICOSIA

PA.SY.KA.F - The Cyprus Association of Cancer Patients and Friends

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ESTONIA

Tallinn-TALLINN

Eesti Vähiliit

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FINLAND

Finland-HELSINKI

Ihoyhdistys

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FINLAND

Finland-HELSINKI

Epilepsialiitto - Epilepsiförbundet ry

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FINLAND

Finland-HELSINKI

Sylva ry

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ERN

FRANCE

HAUTS-DE-FRANCE-MARCQ EN BAROEUL

ANPEA - Association Nationale des Parents d'Enfants Aveugles

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FRANCE

ILE-DE-FRANCE-L'ISLE-ADAM

Association Source Vive

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FRANCE

ILE-DE-FRANCE-PARIS

AIRG-France - Association pour l'Information et la recherche sur les maladies Rénales Génétiques

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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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FRANCE

ILE-DE-FRANCE-PARIS

Epilepsie France

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FRANCE

ILE-DE-FRANCE-PARIS

FFRE - Fondation Française pour la Recherche sur l'Epilepsie

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FRANCE

ILE-DE-FRANCE-PARIS

La Ligue Contre le Cancer

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GERMANY

Berlin-BERLIN

Deutsche Epilepsievereinigung e.V.

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GERMANY

Hamburg-HAMBURG

Epilepsie Selbsthilfegruppe Hamburg-Mitte

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GERMANY

Nordrhein-Westfalen-BONN

Deutsche Kinderkrebsstiftung

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ERN

GERMANY

Nordrhein-Westfalen-KÖLN

Landesverband für Epilepsie Selbsthilfe NRW e.V.

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GERMANY

Nordrhein-Westfalen-WUPPERTAL

E.B.E. - Epilepsie Bundes-Elternverband e.V.

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GREECE

ATTIKI-ATHENS

HRS - Hellenic Retina Society

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GREECE

ATTIKI-ATHENS

TO MELLON - Association of people with genetic disorders

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IRELAND

County Dublin-DUBLIN

Epilepsy Ireland

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IRELAND

County Dublin-DUBLIN

Rare Ireland-Family Support Network

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ITALY

EMILIA ROMAGNA-BOLOGNA

AEER - Associazione Epilessia Emilia Romagna OdV

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ITALY

LAZIO-ROMA

ALTI - Associazione ''Io, domani'' per la Lotta contro i Tumori Infantili

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ITALY

LOMBARDIA-MILANO

AICE - Associazione Italiana Contro l'Epilessia ONLUS

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ITALY

LOMBARDIA-MILANO

FIE - Federazione Italiana Epilessie

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ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

LUXEMBOURG

LUXEMBOURG-BOEVANGE-SUR-ATTERT

Een Haerz fir kriibskrank Kanner / Un coeur pour les enfants atteints de cancer

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MOROCCO

Marrakech-MARRAKECH

AMCEP - Association marocaine contre l'épilepsie

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MOROCCO

Rabat-RABAT

AMDG - Association Marocaine des Génodermatoses

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NETHERLANDS

Utrecht-HOUTEN

EVN - Epilepsie Vereniging Nederland

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NORWAY

Řstlandet-OSLO

NIK - Norsk Interesseforening for Kortvokste

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NORWAY

Řstlandet-OSLO

Norsk Epilepsiforbund

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POLAND

Kraków-KRAKOW

KOLIBER - Stowarzyszenie na rzecz dzieci z choroba nowotworowa

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POLAND

Lodz-LODZ

Fundacja "Krwinka"

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POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

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POLAND

Warszawa-WARSAW

Polskie Stowarzyszenie na Rzecz Dzieci Chorych na Padaczke

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PORTUGAL

SUL-LISBOA

ARP - Associaçăo de Retinopatia de Portugal

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PORTUGAL

SUL-ÉVORA

ANDO Portugal - Associaçăo Nacional de Displasias Ósseas

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ROMANIA

BRASOV-BRASOV

ABC - ASOCIATIA BOLNAVILOR DE CANCER DIN ROMANIA

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ROMANIA

BUCURESTI-BUCURESTI

PAVEL - Association PAVEL (Primind Ajutor Viata Este Luminoasa)

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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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SERBIA

Serbia-BELGRADE

ZVONCICA - Childhood cancer parent organisation

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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

Cataluńa-BARCELONA

AIRG-E - Asociación para la información e investigación sobre enfermedades renales genéticas

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SPAIN

Galicia-A CORUŃA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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SPAIN

Madrid-MADRID

ASION: Asociación Infantil Oncológica de Madrid

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ERN

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-SUNDBYBERG

Svenska epilepsiförbundet

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SWITZERLAND

Suisse Alémanique-USTER

KMSK - Kinder mit seltenen Krankenheiten - Gemeinnütziger Förderverein

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SWITZERLAND

Suisse Alémanique-ZÜRICH

Schweizerischer Verein für Epilepsie - Association Suisse de l'Epilepsie - Associazione Svizzera per l'Epilessia

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SWITZERLAND

Suisse Italienne-BELLINZONA

MGR - Associazione Malattie Genetiche Rare Svizzera Italiana

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SWITZERLAND

Suisse Romande-CHERNEX

AIRG-Suisse Association pour l'Information et la Recherche sur les maladies rénales d'origine Génétique

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SWITZERLAND

Suisse Romande-LAUSANNE

Fondation Eclipse - Epilepsie Suisse romande

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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

Buckinghamshire-GERRARDS CROSS

Epilepsy society

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UNITED KINGDOM

Greater London-LONDON

ARC - Antenatal Results and Choices

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UNITED KINGDOM

Greater London-LONDON

CLIC Sargent (Cancer and Leukaemia in Childhood)

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UNITED KINGDOM

Greater London-LONDON

TCT - Teenage Cancer Trust

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UNITED KINGDOM

Kent-KENT

Epilepsy HERE - Help, Education and Research for Epilepsy

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UNITED KINGDOM

Oxfordshire-WANTAGE

SUDEP Action - making every epilepsy death count

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UNITED KINGDOM

Staffordshire-STAFFORD

CCPA - The Childhood Cancer Parents Alliance

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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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UNITED KINGDOM

West Yorkshire-LEEDS

Epilepsy Action

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AUSTRIA

TIROL-INNSBRUCK

Verein Nephro Tirol

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FINLAND

Finland-HELSINKI

Munuais- ja maksaliitto, Njur- och leverförbundet

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ERN

GERMANY

Bayern-ERDWEG

Bundesselbsthilfevereinigung für Kinder, Jugendliche und Erwachsene mit seltenen, chronischen Skelett-Erkrankungen e.V.

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GERMANY

Rheinland-Pfalz-MAINZ

Bundesverband Niere e.V.

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IRELAND

County Dublin-DUBLIN

Irish Kidney Association

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NETHERLANDS

Noord-Holland-BUSSUM

NVN - Nierpatiënten Vereniging Nederland

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NORWAY

Řstlandet-OSLO

LNT - Landsforeningen for Nyrepasienter og Transplanterte

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PORTUGAL

NORTE-PORTO

ADRNP - Associaçăo de Doentes Renais do Norte de Portugal

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PORTUGAL

SUL-LISBOA

APIR - Associaçăo Portuguesa de Insuficientes Renais

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ROMANIA

BACAU-BACAU

Organizatia trebuie- Bacau

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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

SWEDEN

Region Stockholm-STOCKHOLM

Njurförbundet

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ERN

UNITED KINGDOM

Cambridgeshire-PETERBOROUGH

Kidney Research UK

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UNITED KINGDOM

Hampshire-ALTON

Kidney Care UK

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UNITED KINGDOM

Nottinghamshire-WORKSOP

NFK - National Kidney Federation

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UNITED KINGDOM

West Glamorgan-CARMARTHEN

Cerebra (Support for children with brain-related neurological conditions)

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POLAND

Wroclaw-WROCLAW

WSPOLNIE - Stowarzyszenie na Rzecz Dzieci z Rzadkimi Chorobami Genetycznymi i Ich Rodzin

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Alliances and umbrella organisations

AUSTRIA

WIEN

VIENNA

NF Patients United

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BELGIUM

OOST-VLAANDEREN

SINT-NIKLAAS

NF EUROPE - European Federation for Neurofibromatosis Associations

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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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FRANCE

AUVERGNE-RHONE-ALPES

BRON

EpiCARE Patient Advocacy Group

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ERN
FRANCE

AUVERGNE-RHONE-ALPES

SAINT EGRČVE

EFAPPE : Fédération des Associations en faveur des Personnes handicaPées par des Épilepsies Sévčres

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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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SPAIN

Madrid

MADRID

Federación Espańola de Padres de Nińos con Cáncer

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ERN
SWITZERLAND

Suisse Romande

VUARRENS

ProRaris - Alliance Maladies Rares-Suisse; Allianz Seltener Krankheiten-Schweiz; Alleanza Malattie Rare-Svizzera

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SPAIN

Madrid

MADRID

ALCER: Federación Nacional de Asociaciones para la Lucha Contra las Enfermedades del Rińón

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