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Patient organisations

ITALY

LOMBARDIA-MILANO

Biomedicina e Nutrizione

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BELGIUM

LIEGE-VERLAINE

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

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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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GERMANY

Hessen-NEUSTADT-SPECKSWINKEL

ELA Deutschland e.V.

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ERN

GERMANY

Niedersachsen-BRAUNSCHWEIG

LiBERO - Hilfe für das Kind mit Krankheiten des Nervensystems 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

AIALD - Associazione Italiana Adrenoleucodistrofia ONLUS

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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

TOSCANA-FIRENZE

Voa Voa! Onlus Amici di Sofia

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LUXEMBOURG

LUXEMBOURG-DUDELANGE

ELA au Luxembourg (Association Européenne contre les Leucodystrophies)

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NETHERLANDS

Overijssel-ZWOLLE

VKS - Volwassenen, Kinderen en Stofwisselingsziekten

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PORTUGAL

SUL-MOITA

Raríssimas - Associaçăo Nacional de Deficięncias Mentais e Raras - ANDMR

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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 Espańa - Asociación Espańola 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-TURNHOUT

Alzheimer Liga Vlaanderen vzw

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

RaDiOrg - Rare Diseases Belgium - BE

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BELGIUM

HAINAUT-MOUSCRON

Asbl Chiara VDS - Chiara Vie, Don d'organes et Solidarité

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BELGIUM

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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CANADA

Colombie-Britannique-VANCOUVER

Rare Disease Foundation

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CANADA

Ontario-TORONTO

AboutFace

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FINLAND

Finland-MASKU

Neuroliitto

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FRANCE

NOUVELLE AQUITAINE-BORDEAUX

EwenLife Rare Maladies Rares

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FRANCE

OUTRE-MER-SAINT-PIERRE

Association pour la Sensibilisation aux Maladies Rares, Orphelines et Auto-Immunes ŕ Saint-Pierre-et-Miquelon

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GREECE

ATTIKI-ATHENS

"95" - Rare Alliance Greece

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MALTA

MALTA-VALLETTA

The National Alliance for Rare Diseases Support - Malta

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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

Andalucía-JAÉN

Enfermedades Raras: Mas Visibles

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SPAIN

Castilla - León-TROBAJO DEL CAMINO

ADERLE: Asociación de Enfermedades Raras de León

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SPAIN

Galicia-A CORUŃA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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SPAIN

Madrid-MADRID

INDEPF: Instituto de Investigación y Desarrollo Social de Enfermedades Poco Frecuentes

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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-SOLNA

RBU-Riksförbundet för Rörelsehindrade Barn och Ungdomar

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ERN

SWEDEN

Region Stockholm-STOCKHOLM

Demensförbundet

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SWITZERLAND

Suisse Alémanique-BERN

Alzheimer Schweiz - Alzheimer Suisse - Alzheimer Svizzera

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TURKEY

TURKEY-ISTANBUL

Türkish Alzheimer Society

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UNITED KINGDOM

West Glamorgan-CARMARTHEN

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

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AUSTRALIA

New South Wales-ARTARMON

Variety - the Children's Charity

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AUSTRALIA

New South Wales-DARLINGHURST

Genetic Alliance Australia

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AUSTRALIA

New South Wales-GLADESVILLE

AWCH - Association for the Wellbeing of Children in Healthcare

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AUSTRALIA

Victoria-PARKVILLE

GSNV - Genetic Support Network of Victoria

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CYPRUS

Cyprus-NICOSIE

Pancyprian Association For Rare Genetic Diseases « Unique Smiles »

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GERMANY

Bayern-ASCHAFFENBURG

Kindernetzwerk e.V. - Selbsthilfe für Familien mit Kindern und jungen Erwachsenen mit chronischen Erkrankungen und Behinderungen

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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

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

LATVIA

LATVIA-RIGA

Biedriba Genetiski parmantoto slimibu pacientiem un lidzcilvekiem "Saknes"

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SLOVAKIA

Presovsky kraj-BARDEJOV

ZOGO - Zdruzenie Ojedlinelych Genetickych Ochorenie

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SWITZERLAND

Suisse Alémanique-USTER

KMSK - Förderverein für Kinder mit seltenen Krankheiten

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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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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-EPSOM

Gene People

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UNITED KINGDOM

Surrey-OXTED

Unique - The Rare Chromosome Disorder Support Group

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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

FRANCE

BRETAGNE-RENNES

Association Surrénales

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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-FÜRTH

Netzwerk Hypophysen- und Nebennierenerkrankungen e.V.

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ERN

GREECE

THESSALONIKI-PYLAIA

Association of Patients and Friends of Patients with Hereditary Metabolic Diseases "KRIKOS ZOIS"

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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

SICILIA-PALERMO

IRIS - Associazione Siciliana Malattie Ereditarie Metaboliche Rare OdV

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ITALY

TOSCANA-FIRENZE

AMMeC - Associazione Malattie Metaboliche Congenite - ONLUS

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ITALY

VENETO-PONTE SAN NICOLŇ

COMETA ASMME - Associazione Studio Malattie Metaboliche Ereditarie - ODV

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ITALY

VENETO-VERONA

AISMME - Associazione Italiana Sostegno Malattie Metaboliche Ereditarie APS

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NETHERLANDS

Gelderland-NIJKERK

Bijniervereniging NVACP

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ERN

PORTUGAL

SUL-CAPARICA

APCDG - Associaçăo Portuguesa do Síndrome CDG e outras doenças metabólicas raras

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SPAIN

Madrid-MADRID

Federación Espańola de Enfermedades Metabólicas Hereditarias

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SPAIN

Madrid-MADRID

ASFEMA: Asociación de Familias con Enfermedades Metabólicas de Madrid

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UNITED KINGDOM

Cheshire-CHESTER

Metabolic Support UK

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