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Patient organisations

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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BELGIUM

ANTWERPEN-BEVEREN

BOKS - Belgische Organisatie voor Kinderen en Volwassenen met een Stofwisselingsziekte V.Z.W. - Association belge pour les enfants et adultes atteints d'une maladie métabolique A.S.B.L.

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ERN

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

Association of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS"

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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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CZECH REPUBLIC

Capital City Prague-PRAHA

NS PKU - Narodni sdruzeni PKU a jinych DMP

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CZECH REPUBLIC

Vysocina-HAVLICKUV BROD

METODEJ

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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

AUVERGNE-RHONE-ALPES-SAINTE-FOY-LES-LYON

AdéTire - A Tire d'Aile - Soutien moral et financier aux familles touchées par une maladie héréditaire du métabolisme

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FRANCE

ILE-DE-FRANCE-ASNIERES

AG - Association Grandir : Association de parents d'enfants ayant des problèmes de croissance

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ERN

FRANCE

ILE-DE-FRANCE-CHATEAU LANDON

Association Les maux d'enfants

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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

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

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FRANCE

NOUVELLE AQUITAINE-CHAMPNIERS

Association Les Enfants du Jardin

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FRANCE

NOUVELLE AQUITAINE-SAINT-MEDARD-EN-JALLES

Association SLO Aide

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GERMANY

Baden-Württemberg-AMMERBUCH

SLO Deutschland e.V.

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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-ERDWEG

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

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GERMANY

Niedersachsen-BRAUNSCHWEIG

dgti - Deutsche Gesellschaft für Transidentität und Intersexualität e.V.

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GREECE

ATTIKI-ATHENS

PASIFASMEN - Hellenic Association of Friends and Patients with rare metabolic and endocrinologic diseases

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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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IRELAND

County Meath-NAVAN

Little People of Ireland - LPI

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ITALY

LAZIO-ROMA

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

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ITALY

LOMBARDIA-MILANO

APMMC - Associazione Prevenzione Malattie Metaboliche Congenite

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ITALY

LOMBARDIA-MILANO

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

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ITALY

LOMBARDIA-MONZA

ABM - Associazione per la Tutela del Bambino con Malattie Metaboliche

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ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

ITALY

PIEMONTE-TORINO

META - Associazione Malattie Metaboliche Ereditarie del Piemonte e Valle d'Aosta

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ITALY

SICILIA-PALERMO

IRIS - Associazione Siciliana Malattie Ereditarie Metaboliche Rare

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ITALY

TOSCANA-FIRENZE

AMMeC - Associazione Malattie Metaboliche Congenite - ONLUS

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ITALY

VENETO-PADOVA

AISMME - Associazione Italiana Sostegno Malattie Metaboliche Ereditarie APS

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ITALY

VENETO-PONTE SAN NICOLÒ

COMETA ASMME - Associazione Studio Malattie Metaboliche Ereditarie - ONLUS

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NETHERLANDS

Noord-Holland-DE KWAKEL

Handvereniging

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NETHERLANDS

Noord-Holland-HOOFDDORP

BVKM - Belangenvereniging van Kleine Mensen

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NETHERLANDS

Overijssel-ZWOLLE

VKS - Volwassenen, Kinderen en Stofwisselingsziekten

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NORWAY

Vestlandet-ÅLESUND

Norsk Dysmeliforening

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POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

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POLAND

Warszawa-LOMIANKI

SLOmisie - Stowarzyszenie na Rzecz Osób z Zespolem Smitha, Lemlego I Opitza

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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

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-PORTO

APOFEN - Associação Portuguesa de Fenilcetonúria e Outras Doenças Metabólicas

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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

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

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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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PORTUGAL

SUL-LISBOA

Raríssimas - Associação Nacional de Deficiências Mentais e Raras

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PORTUGAL

SUL-SEIXAL

Associação Portuguesa do Síndrome CDG e outras doenças metabólicas raras

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ROMANIA

BACAU-BACAU

Organizatia trebuie- Bacau

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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

Andalucía-ALMERÍA

FPF: Fundación Poco Frecuente

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SPAIN

Andalucía-COÍN

ADISEN: Asociación Nacional de Addison y Otras Enfermedades Endocrinas

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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

Madrid-MADRID

Federación Española de Enfermedades Metabólicas Hereditarias

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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

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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SWEDEN

Region Stockholm-STOCKHOLM

Jenny Mossler Rockströms stiftelse för personer med Smith Lemli Opitz Syndrom (SLOS)

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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-BASEL

VKM - Verein Kleinwüchsiger Menschen der Schweiz

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SWITZERLAND

Suisse Alémanique-BERN

INSIEME Schweiz Suisse Svizzera

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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-ARZIER

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

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SWITZERLAND

Suisse Romande-CULLY

ARPPT - Association Romande des Personnes de Petite Taille

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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

Cheshire-CHESTER

Metabolic Support UK

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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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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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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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