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Patient organisations

NETHERLANDS

Overijssel-ZWOLLE

VKS - Volwassenen, Kinderen en Stofwisselingsziekten

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BELGIUM

LIEGE-VERLAINE

ELA Belgique A.S.B.L. - Association européenne contre les leucodystrophies [Antenne Belgique]

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CANADA

Québec-GREENFIELD PARK

AQPEHV - Association québécoise des parents d'enfants handicapés visuels

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CYPRUS

Cyprus-LIMASSOL

Association of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS"

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FRANCE

BRETAGNE-REDON

ACL - Association Contre la Leucodystrophie

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FRANCE

GRAND-EST-LAXOU

ELA France - Association Européenne contre les Leucodystrophies

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FRANCE

NOUVELLE AQUITAINE-JOURGNAC

Ma Différence

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GERMANY

Hessen-NEUSTADT

ELA Deutschland e.V.

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GERMANY

Sachsen-LEIPZIG

Myelin Projekt Deutschland e.V.

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ITALY

LAZIO-FORMIA

AILU - Associazione Italiana Leucodistrofie Unite e Malattie Rare

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ITALY

LAZIO-ROMA

Comitato Italiano Progetto Mielina

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ITALY

LAZIO-ROMA

ELA Italia ONLUS

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ITALY

LOMBARDIA-MILANO

Biomedicina e Nutrizione

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LUXEMBOURG

LUXEMBOURG-DUDELANGE

ELA au Luxembourg (Association Européenne contre les Leucodystrophies)

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SPAIN

Baleares-PALMA DE MALLORCA

ABAIMAR - Associació Balear d'Infants amb Malalties Rares

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SPAIN

Madrid-COSLADA

ELA España - Asociación Española contra la Leucodistrofia

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SWITZERLAND

Suisse Alémanique-TAVANNES

ELA Suisse - ELA Schweiz - Association Européenne contre les Leucodystrophies

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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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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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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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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-CHATEAU LANDON

Association Les maux d'enfants

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FRANCE

NOUVELLE AQUITAINE-CHAMPNIERS

Association Les Enfants du Jardin

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GERMANY

Baden-Württemberg-BRETZFELD

LD - Lebertransplantierte 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

Hamburg-HAMBURG

Verein leberkrankes Kind e.V.

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GERMANY

Nordrhein-Westfalen-KÖLN

Deutsche Leberhilfe 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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ITALY

LOMBARDIA-MILANO

APMMC - Associazione Prevenzione Malattie Metaboliche Congenite

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ITALY

LOMBARDIA-MONZA

ABM - Associazione per la Tutela del Bambino con Malattie Metaboliche

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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

Utrecht-HOOGLAND

Nederlandse Leverpatiënten Vereniging

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PORTUGAL

NORTE-PORTO

APOFEN - Associação Portuguesa de Fenilcetonúria e Outras Doenças Metabólicas

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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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SPAIN

Galicia-EIRÍS DE ARRIBA

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-MOLINA DE SEGURA

AMER - Asociación Molinense de Enfermedades Raras

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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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SWITZERLAND

Suisse Alémanique-SISSACH

EVLK - Elternvereinigung lebererkrankter Kinder.Association des parents d'enfants malades du foie.Associazione dei genitori di bambini malati al fegato

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UNITED KINGDOM

Cheshire-CHESTER

Metabolic Support UK

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UNITED KINGDOM

Hampshire-BOURNEMOUTH

British Liver Trust

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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 Midlands-BIRMINGHAM

Children's Liver Disease Foundation

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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

LUXEMBOURG

LUXEMBOURG

LUXEMBOURG

ELA international

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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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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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