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Patient organisations

CANADA

Ontario-KING CITY

Aplastic Anemia and Myelodysplasia Association of Canada

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FRANCE

ILE-DE-FRANCE-LEVALLOIS-PERRET

Xtraordinaire - Association Nationale des Retards Mentaux liés au chromosome X

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FRANCE

ILE-DE-FRANCE-PARIS

ASSEDEA - Association d'Etude et d'Aide aux Enfants Amputés

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FRANCE

ILE-DE-FRANCE-PARIS

CCM - Connaître et combattre les Myélodysplasies

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NETHERLANDS

Utrecht-NIEUWEGEIN

VOKK - Vereniging Ouders, Kinderen en Kanker

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NETHERLANDS

Utrecht-UTRECHT

Stichting Hematon

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PORTUGAL

CENTRO-ESTORIL

CERCICA - Cooperativa de Educação e Reabilitação de Cidadão Inadaptados de Cascais

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PORTUGAL

NORTE-AMARANTE

CERCIMARANTE - Cooperativa de Educação e Reabilitação de Crianças Inadaptadas de Amarante

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PORTUGAL

NORTE-S. JOÃO DA MADEIRA

Cooperativa de Educação e Reabilitação de Crianças Inadaptadas S. João da Madeira

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PORTUGAL

NORTE-SANTA MARIA DA FEIRA

CERCIFEIRA - Cooperativa de Educação e Reabilitação de Crianças Inadaptadas de Sta. Maria da Feira

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PORTUGAL

NORTE-VILA NOVA DE FAMALICÃO

AFPAD - Associação Famalicence de Prevenção e Apoio à Deficiência

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PORTUGAL

SUL-ABRANTES

Centro de Recuperação Infantil de Abrantes

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PORTUGAL

SUL-FARO

AAPACDM - Associação Algarvia de Pais e Amigos de Crianças Diminuídas Mentais

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PORTUGAL

SUL-LISBOA

CEDEMA - Associação de Pais e Amigos dos Deficientes Mentais Adultos

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PORTUGAL

SUL-LISBOA

CERCILISBOA - Programa Comunitário de Intervenção Precoce

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PORTUGAL

SUL-LISBOA

LINADEM - Liga para o Estudo e Apoio à Inserção Social

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SWEDEN

Region Stockholm-LIDINGÖ

Föräldraföreningen Anonymous

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SWITZERLAND

Suisse Romande-ARZIER

Xtraordinaire - Association Nationale des Retards Mentaux liés au chromosome X - Antenne Suisse.

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UNITED KINGDOM

Greater London-LONDON

MDS (Myelodysplastic Syndrome) UK Patient Support Group

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

RaDiOrg - Rare Diseases Belgium - BE

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

STAN Trefpunt VerSTANdelijke Handicap vzw

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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

ARRONDISSEMENT BRUSSELS-CAPITAL-EVERE

INCLUSION A.S.B.L.

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BELGIUM

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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CYPRUS

Cyprus-LIMASSOL

Saint Stylianos Foundation

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CYPRUS

Cyprus-NICOSIA

CSJF - Christos Stelios Ioannou Foundation

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DENMARK

Jylland-BRAMMING

Landsforeningen for arm/bendefekte og AMC

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FINLAND

Finland-TAMPERE

Kehitysvammaisten Tukiliitto

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FRANCE

ILE-DE-FRANCE-PARIS

UNAPEI - Union Nationale de parents, de personnes handicapées mentales et de leurs amis

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GERMANY

Bayern-ERDWEG

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

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GERMANY

Bayern-RIEMERLING

Leukämie-Online/LeukaNET e.V.

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ERN

GERMANY

Nordrhein-Westfalen-MÜNSTER

SELP - Selbsthilfevereinigung zur Unterstützung erwachsener Leukämie- und Lymphom-Patienten e.V.

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ITALY

LAZIO-ROMA

AIL - Associazione Italiana contro le Leucemie-Linfomi e Mieloma - ONLUS

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ITALY

LAZIO-ROMA

BA.BI.S. ODV - La Banda dei Bimbi Speciali

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ITALY

LOMBARDIA-MILANO

RAGGIUNGERE - Associazione Italiana per Bambini con Malformazioni agli Arti - ONLUS

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NETHERLANDS

Noord-Holland-DE KWAKEL

Handvereniging

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NORWAY

Vestlandet-ÅLESUND

Norsk Dysmeliforening

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POLAND

Kraków-KRAKOW

Fundacja Urszuli Smok "Podaruj Zycie"

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POLAND

Lublin-TORUN

Stowarzyszenie Chorych na Bialaczke

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POLAND

Warszawa-WARSAW

Fundacja Przeciwko Leukemii im. Agaty Mroz Olszewskiej

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POLAND

Warszawa-WARSAW

Fundacja Urszuli Jaworskiej

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POLAND

Warszawa-WARSAW

Polskie Stowarzyszenie na Rzecz Osob z Uposledzeniem Umyslowym

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POLAND

Wroclaw-WROCLAW

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

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PORTUGAL

SUL-LISBOA

APPDA - Lisboa - Associação Portuguesa para as Perturbações do Desenvolvimento e Autismo - Lisboa

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PORTUGAL

SUL-LISBOA

Raríssimas - Associação Nacional de Deficiências Mentais e Raras

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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 CORUÑA

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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SWEDEN

Region Stockholm-BROTTBY

Willefonden

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SWEDEN

Region Stockholm-SOLNA

RBU-Riksförbundet för Rörelsehindrade Barn och Ungdomar

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ERN

SWEDEN

Region Stockholm-SOLNA

Riksförbundet för barn, unga och vuxna med utvecklingsstörning, FUB

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SWEDEN

Region Stockholm-STOCKHOLM

FfdN - Föreningen för de Neurosedynskadade

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SWITZERLAND

Suisse Alémanique-BASEL

Selbsthilfegruppe Pinocchio - Kontaktstelle für Eltern mit Kinder ohne Finger/Hand/Arm

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SWITZERLAND

Suisse Alémanique-BERN

INSIEME Schweiz Suisse Svizzera

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UNITED KINGDOM

Cheshire-WARRINGTON

STEPS - Supporting patients affected by a lower limb / hip condition

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UNITED KINGDOM

Devon-TAVISTOCK

REACH - The association for Children with Upper Limb Deficiency

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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-PENRITH

IDFA - Immune Deficiencies Foundation Australia

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AUSTRALIA

New South Wales-ST LEONARDS

Variety - the Children's Charity

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AUSTRIA

NIEDERÖSTERREICH-RIEDERBERG

Österreichische Selbsthilfegruppe für primäre Immundefekte (ÖSPID)

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-WOLUWE-SAINT-PIERRE

Les Enfants de Salus Sanguinis, Fondation d'utilité publique

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BELGIUM

VLAAMS BRABANT-WILSELE

BePOPI - Belgische organisatie van en voor PID-patiënten/Organisation belge de et pour des patients DIP

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DENMARK

Sjælland-SKOVLUNDE

The Danish Association for Immunodeficiencies

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FINLAND

Finland-HELSINKI

Immuunipuutospotilaiden yhdistys ry.

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FRANCE

GRAND-EST-TOUL

Association IRIS - Immunodéficience primitive, Recherche, Information, Soutien

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GERMANY

Bayern-SCHNAITSEE

dsai - Deutsche Selbsthilfe Angeborene Immundefekte e.V.

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GERMANY

Hessen-RÜSSELSHEIM

Leukämiehilfe RHEIN-MAIN e.V.

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GERMANY

Niedersachsen-SPRINGE

Kranich -Selbsthilfegruppe für Erwachsene nach einer Krebserkrankung im Kindes-/Jugendalter in Norddeutschland

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GERMANY

Nordrhein-Westfalen-BONN

DLH - Deutsche Leukämie- und Lymphom-Hilfe e.V.

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GREECE

ATTIKI-ATHENS

Armonia - Association of Greek friends for paediatric immunology, primary immunodeficiencies (Harmony)

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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

LAZIO-ROMA

FIAGOP - Federazione Italiana Associazioni Genitori Oncoematologia Pediatrica

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ERN

ITALY

LAZIO-ROMA

PRO IDPI - Pro ImmunoDeficienze Primitive Italiane

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ITALY

LOMBARDIA-BRESCIA

AIP odv - Associazione Immunodeficienze Primitive

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ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

ITALY

UMBRIA-PERUGIA

Comitato per la Vita "Daniele Chianelli"

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MOROCCO

Casablanca-CASABLANCA

HAJAR - Association de soutien aux patients atteints de déficits immunitaires primitifs

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NETHERLANDS

Noord-Brabant-GEFFEN

SAS - Stichting voor Afweerstoornissen

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POLAND

Lodz-LODZ

Immunoprotect - Stowarzyszenie na rzecz osob z niedoborami odpornosci

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POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

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PORTUGAL

NORTE-PORTO

Associação Portuguesa de Leucemias e Linfomas (Membro da Myeloma Euronet)

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PORTUGAL

NORTE-VILA DO CONDE

A.P.D.I.P - Associação Portuguesa de Doentes com Imunodeficiência Primária

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PORTUGAL

SUL-LISBOA

APCL - Associação Portuguesa Contra a Leucemia

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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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SPAIN

Cataluña-BARCELONA

Fundación "BARCELONA PID FOUNDATION"

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ERN

SPAIN

Madrid-MADRID

AEAL - Asociación Española de Afectados por Linfomas, Mielomas y Leucemias

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SPAIN

Madrid-MADRID

AEDIP - Asociación Española de Déficits Inmunitarios Primarios

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SWEDEN

Region Stockholm-SUNDBYBERG

Blodcancerförbundet

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SWEDEN

Region Örebro län-ÖREBRO

Primär immunbristorganisationen

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SWITZERLAND

Suisse Alémanique-EBMATINGEN

SFK Stiftung zur Förderung der Knochenmarktransplantation Schweiz

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SWITZERLAND

Suisse Alémanique-USTER

KMSK - Kinder mit seltenen Krankenheiten - Gemeinnütziger Förderverein

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SWITZERLAND

Suisse Alémanique-ZÜRICH

SVAI Schweizerische Vereinigung für Angeborene Immunodefekte - Association Suisse pour Immuno-Déficience Primitive - Associazione Svizzera per Immunodeficienze Primitive

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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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TURKEY

TURKEY-ANKARA

FOUNDATION FOR CHILDREN WITH LEUKEMIA

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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

Cornwall-DOWNDERRY

IPOPI - International Patient Organisation for Primary Immunodeficiencies

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UNITED KINGDOM

Essex-COLCHESTER

PID UK - Primary Immunodeficiency UK

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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 Glamorgan-CARMARTHEN

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

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UNITED KINGDOM

West Sussex-HAYWARDS HEATH

GDUK- Genetic Disorders UK

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UNITED KINGDOM

Worcestershire-WORCESTER

Leukaemia CARE

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AUSTRALIA

New South Wales-BOWRAL

RCA - Rare Cancers Australia Limited

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSEL

Fondation contre le Cancer / Stichting tegen Kanker

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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

VLAAMS BRABANT-HALLE

KIKOV-Leuven - Kinderkanker Oudervereniging Leuven vzw

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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

Sylva ry

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ERN

FRANCE

ILE-DE-FRANCE-L'ISLE-ADAM

Association Source Vive

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FRANCE

ILE-DE-FRANCE-PARIS

La Ligue Contre le Cancer

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GERMANY

Berlin-BERLIN

Deutsche Stiftung für junge Erwachsene mit Krebs

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ERN

GERMANY

Nordrhein-Westfalen-BONN

Deutsche Kinderkrebsstiftung

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ERN

ITALY

LAZIO-ROMA

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

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LUXEMBOURG

LUXEMBOURG-BOEVANGE-SUR-ATTERT

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

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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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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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SPAIN

Madrid-MADRID

ASION: Asociación Infantil Oncológica de Madrid

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ERN

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

Staffordshire-STAFFORD

CCPA - The Childhood Cancer Parents Alliance

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SERBIA

Serbia-BELGRADE

ZVONCICA - Childhood cancer parent organisation

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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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UNITED KINGDOM

Cornwall

DOWNDERRY

IPOPI - International Patient Organisation for Primary Immunodeficiencies Network

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SPAIN

Madrid

MADRID

Federación Española de Padres de Niños con Cáncer

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ERN