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Patient organisations

AUSTRALIA

Victoria-NORTH MELBOURNE

MDA - Muscular Dystrophy Australia

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AUSTRALIA

Western Australia-NEDLANDS

MDWA - Muscular Dystrophy Western Australia

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CANADA

Ontario-TORONTO

MDC - Muscular Dystrophy Canada / DMC - Dystrophie Musculaire Canada

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CYPRUS

Cyprus-LIMASSOL

Cyprus Red Cross Society-Children Therapy Centre Stella Soulioti

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CZECH REPUBLIC

Capital City Prague-PRAHA

Asociace muskularnich dystrofiku

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ITALY

VENETO-PADOVA

UILDM - Unione Italiana Lotta alla Distrofia Muscolare

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NETHERLANDS

Utrecht-BAARN

Spierziekten Nederland

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POLAND

Gdansk-GDANSK

PPMD - Fundacja Parent Project Muscular Dystrophy

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POLAND

Warszawa-NOWE CHECHLO

Stowarzyszenie Pomocy Chorym na Dystrophie Musculorum

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NORWAY

Řstlandet-NESBRU

Foreningen for Muskelsyke

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AUSTRALIA

Western Australia-WEST PERTH

DF - Duchenne Foundation

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CZECH REPUBLIC

South Moravia-BRNO

Parent Project - Obcanské sdruzeni rodicu deti se svalovou dystrofii Duchenne/Becker (DMD/BMD)

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FRANCE

ILE-DE-FRANCE-EVRY

AFM Téléthon - Association Française contre les Myopathies

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FRANCE

NOUVELLE AQUITAINE-SAINT-MARTIN-DE-RIBERAC

AMIS FSH

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GERMANY

Niedersachsen-HANNOVER

MYOTONIA - Forum und Information Myotonia Congenita

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GERMANY

Nordrhein-Westfalen-BOCHUM

aktion benni & co e.V.

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HUNGARY

Közép-Magyarország-BUDAPEST

Gyógyító Jószándék Alapítvány

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ISRAEL

ISRAEL-KFAR SABA

Little Steps - Israel association for children with Duchenne and Becker muscular dystrophy

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ISRAEL

ISRAEL-KFAR-SABA

The non-profit organization for promotion of health and cure of OPMD

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ITALY

EMILIA ROMAGNA-MODENA

AIDMED - Associazione Italiana Distrofia Muscolare di Emery Dreifuss ONLUS

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ITALY

LAZIO-ROMA

Associazione FSHD - Distrofia Muscolare facio-scapolo-omerale: Ricerca e Sostegno ONLUS

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ITALY

LAZIO-ROMA

Parent Project aps

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ITALY

PIEMONTE-TORINO

Fedra ONLUS

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ITALY

TOSCANA-FIRENZE

AIM Rare ONLUS - Associazione Italiana contro le Miopatie Rare

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ITALY

VENETO-SAN PIETRO DI FELETTO

Collagene VI Italia Onlus

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NETHERLANDS

Zuid-Holland-DEN HAAG

FSHD Stichting

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ROMANIA

DOLJ-CRAIOVA

Parent Project Romania - Asociatia pentru Cercetare si Asistenta in Distrofia Musculara

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SLOVAKIA

Bratislavsky kraj-BRATISLAVA

OMD v SR - Organizacia muskularnych dystrofikov v SR

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SPAIN

Baleares-PALMA DE MALLORCA

ABAIMAR: Associació Balear d'Infants amb Malalties Rares

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SPAIN

Castilla - León-LEÓN

ALER - Asociación Leonesa de Enfermedades Raras y sin diagnóstico

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SPAIN

Cataluńa-CAMARLES

Fundación Noelia - Nińos contra la Distrofia Muscular Congénita por déficit de colágeno VI

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SPAIN

Cataluńa-VILANOVA DEL VALLÉS

FSHD-SPAIN: Afectados de Distrofia Muscular FacioEscapuloHumeral Espańa

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SPAIN

Madrid-ALCORCÓN

Asociación Duchenne Parent Project Espańa

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SPAIN

Madrid-MADRID

Fundación Andrés Marcio, nińos contra la Laminopatía

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SWEDEN

Region Stockholm-LIDINGÖ

Föräldraföreningen Anonymous

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SWITZERLAND

Suisse Alémanique-MÖHLIN

MDNWCH - Myotone Dystrophie Selbsthilfegruppe Nordwestschweiz

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SWITZERLAND

Suisse Romande-MORGES

Progena - Swiss Duchenne Foundation

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UNITED KINGDOM

Cambridgeshire-PETERBOROUGH

Facial Palsy UK

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UNITED KINGDOM

Greater London-LONDON

Action Duchenne

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UNITED KINGDOM

Greater London-LONDON

DFSG - Duchenne Family Support Group

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UNITED KINGDOM

Greater London-LONDON

Support Group Facio Scapulo Humeral Muscular Dystrophy (FSH-MD) Support Group UK

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UNITED KINGDOM

Greater London-LONDON

Muscular Dystrophy UK (MDC)

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UNITED KINGDOM

Lincolnshire-BRIGG

Cure DM

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UNITED KINGDOM

Nottinghamshire-NOTTINGHAM

MDSG - Myotonic Dystrophy Support Group

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AUSTRIA

OBERÖSTERREICH-LINZ

MARATHON - Verein von Eltern und Angehörigen gegen Muskelerkrankungen bei Kindern

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AUSTRIA

WIEN-WIEN

Österreichische Gesellschaft für Muskelkranke

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BELGIUM

ANTWERPEN-BORGERHOUT

Spierziekten Vlaanderen VZW

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BELGIUM

HAINAUT-LA LOUVIERE

ABMM - Association Belge contre les Maladies neuro-Musculaires A.S.B.L.

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BELGIUM

VLAAMS BRABANT-HAACHT

Duchenne Parent Project Belgium V.Z.W.

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BULGARIA

 South-West region-SOFIA

BNMDA - Bulgarian Neuromuscular Diseases Association

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CANADA

Québec-CHICOUTIMI

CORAMH - Corporation de recherche et d'action sur les maladies héréditaires

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CANADA

Québec-MONT-TREMBLANT

La Force DMD

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CYPRUS

Cyprus-LIMASSOL

TF - Theotokos Foundation

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CYPRUS

Cyprus-NICOSIA

MDA - Cyprus Muscular Dystrophy Association

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FINLAND

Finland-TURKU

Lihastautiliitto ry

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FRANCE

OCCITANIE-GRUISSAN

APIMS - Les Amis du Portail d'Information sur la Maladie de Steinert et autres dystrophies myotoniques

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GERMANY

Baden-Württemberg-FREIBURG

DGM - Deutsche Gesellschaft für Muskelkranke e.V.

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GERMANY

Hamburg-HAMBURG

DMH - Deutsche Muskelschwund-Hilfe e.V.

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IRELAND

County Donegal-LIFFORD, CO. DONEGAL

Duchenne Ireland

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IRELAND

County Dublin-DUBLIN

Muscular Dystrophy Ireland

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ISRAEL

ISRAEL-REHOVOT

MESHI - Support group of families with members affected by a neuromuscular atrophy disease

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ITALY

PIEMONTE-NICHELINO

AltroDomani ONLUS

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LATVIA

LATVIA-RIGA

Reto slimibu biedriba Caladrius

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MOROCCO

Rabat-RABAT

AMM - Association marocaine de lutte contre les myopathies

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NETHERLANDS

Utrecht-VEENENDAAL

Duchenne Parent Project

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POLAND

Szczecin-SZCZECIN

Fundacja Pomocy Chorym na Zanik Miesni

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POLAND

Warszawa-WARSAW

Polskie Towarzystwo Chorob Nerwowo-Miesniowych

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PORTUGAL

NORTE-PORTO

APN - Associaçăo Portuguesa de Doentes Neuromusculares

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PORTUGAL

SUL-LISBOA

Associaçăo Portuguesa de Miastenia Gravis, Doenças Neuromusculares e Fibromialgia

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SPAIN

Comunidad Valenciana-VILLAJOYOSA

AHEDYSIA: Asociación Humanitaria de Enfermedades Degenerativas y Síndromes de la Infancia y Adolescencia

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SWEDEN

Region Stockholm-SOLNA

Neuroförbundet (Neurologiskt handikappades riksförbund)

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SWITZERLAND

Suisse Alémanique-ZÜRICH

Schweizerische Muskelgesellschaft

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SWITZERLAND

Suisse Romande-YVERDON

ASRIMM - Association Suisse Romande Intervenant contre les Maladies neuro-Musculaires

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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

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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FRANCE

ILE-DE-FRANCE-PLAISIR

Vaincre l'Alpha

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FRANCE

PROVENCE-ALPES-COTE D'AZUR-LE TIGNET

AMCVHS - Association Mieux Comprendre et Vivre l'Hydrocéphalie et la Syringomyélie

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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-MILANO

AICa3 - Associazione Italiana Calpaina 3 ONLUS

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ITALY

LOMBARDIA-TALAMONA

GFB - Gruppo Familiari Beta-Sarcoglicanopatie - ONLUS

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ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

ITALY

PUGLIA-ALTAMURA

A.MA.R.A.M. - Associazione Malattie Rare dell'Alta Murgia aps

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POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

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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

Castilla - León-TROBAJO DEL CAMINO

ADERLE: Asociación de Enfermedades Raras de León

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SPAIN

Cataluńa-MATARÓ

Asociación Proyecto Alpha - Asociación de distrofia muscular de cinturas por déficit de sarcoglicanos

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SPAIN

Comunidad Valenciana-VILA-REAL

Asociación Conquistando Escalones

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SPAIN

Galicia-A CORUŃA

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

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

Cambridgeshire-ST NEOTS

PUMPA - The Purine Metabolic Patients' Association

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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

UNITED KINGDOM

Tyne & Wear

NEWCASTLE UPON TYNE

TREAT-NMD : Neuromuscular Network Associations

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FRANCE

ILE-DE-FRANCE

PARIS

Euro-DyMA : Fédération des associations européennes de la dystrophie myotonique

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NETHERLANDS

Utrecht

VEENENDAAL

World Duchenne Organization

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SLOVENIA

SLOVENIA

LJUBLJANA

EAMDA : European alliance of Neuromuscular disorders associations

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SPAIN

Cataluńa

BARCELONA

ASEM: Federación Espańola de Enfermedades Neuromusculares

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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

Cataluńa

BARCELONA

FECAMM - Federació Catalana de Malalties Minoritaries

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SPAIN

Madrid

MADRID

FEDER: Federación Espańola 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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