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Patient organisations

CYPRUS

Cyprus-LIMASSOL

Association of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS"

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ITALY

LOMBARDIA-SENAGO

AIMPS - Associazione Italiana Mucopolisaccaridosi e Malattie Affini - ONLUS

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SPAIN

Cataluña-IGUALADA

MPS España - Asociación de las Mucopolisacaridosis y síndromes relacionados

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UNITED KINGDOM

Buckinghamshire-AMERSHAM

MPS Society - The Society for Mucopolysaccharide Diseases

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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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BELGIUM

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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CANADA

Colombie-Britannique-VANCOUVER

The Canadian Society for Mucopolysaccharide & Related Diseases Inc.

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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-LIDINGÖ

Föräldraföreningen Anonymous

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SWEDEN

Region Stockholm-SOLNA

RBU-Riksförbundet för Rörelsehindrade Barn och Ungdomar

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ERN

UNITED KINGDOM

West Glamorgan-CARMARTHEN

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

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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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BELGIUM

HAINAUT-HAUTRAGE (SAINT-GHISLAIN)

Tous ensemble, main dans la main A.S.B.L.

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CZECH REPUBLIC

Capital City Prague-PRAHA

Sdruzeni META - sdruzeni pacientu se stradavymi onemocnenimi,

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CZECH REPUBLIC

Olomouc-OLOMOUC

Pro MPS - Spolecnost pro mukopolysaridosu

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FRANCE

ILE-DE-FRANCE-MASSY

VML - Vaincre les Maladies Lysosomales

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GREECE

ATTIKI-ATHENS

Greek Gaucher and other lysosomal diseases association

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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 Limerick-BALLYNEETY

Irish Society for Mucopolysaccharide Diseases

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ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

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POLAND

Warszawa-GLOSKOW

Stowarzyszenie Chorych na Mukopolisacharydoze i Choroby Rzadkie

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PORTUGAL

SUL-LISBOA

APL - Associação Portuguesa das Doenças do Lisossoma

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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-ATTALENS

VML Suisse - Vaincre les Maladies Lysosomales Suisse

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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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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

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-FREIBURG

SPATZ - Selbsthilfe für Kinder mit chronischer Stoffwechsel-, Hormon- oder Zuckererkrankung 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

Overijssel-ZWOLLE

VKS - Volwassenen, Kinderen en Stofwisselingsziekten

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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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SPAIN

Madrid-MADRID

Federación Española de Enfermedades Metabólicas Hereditarias

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UNITED KINGDOM

Cheshire-CHESTER

Metabolic Support 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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FRANCE

ILE-DE-FRANCE

MASSY

VML Europe - Vaincre les Maladies Lysosomales

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UNITED KINGDOM

Gloucestershire

DURSLEY

The UK Lysosomal Storage Disorder (LSD) Patient Collaborative

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