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Patient organisations

GERMANY

Berlin-BERLIN

VfASS - Verein für angeborene Stoffwechselstörungen e.V.

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AUSTRALIA

New South Wales-SURRY HILLS

Mito Foundation

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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

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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CANADA

Alberta-CALGARY

MitoCanada Foundation

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CANADA

Colombie-Britannique-VANCOUVER

Rare Disease Foundation

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CANADA

Ontario-TORONTO

AboutFace

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CANADA

Ontario-TORONTO

PCU et Maladies Apparentées Canada Inc

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CYPRUS

Cyprus-LIMASSOL

Association of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS"

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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

Sjælland-BROENSHOEJ

Mitokondrie-foreningen i Danmark

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FINLAND

Finland-MASKU

Mitokondrioyhdistys ry - Mitokondrioförening rf

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FRANCE

HAUTS-DE-FRANCE-HALLOUIN

AGM - Association Guerrier Mitochondrial

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FRANCE

NOUVELLE AQUITAINE-BORDEAUX

EwenLife Rare Maladies Rares

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FRANCE

OCCITANIE-SAINTE FOY DE PEYROLIÈRES

AMMi - Association contre les Maladies Mitochondriales

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FRANCE

OUTRE-MER-SAINT-PIERRE

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

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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

"95" - Rare Alliance Greece

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GREECE

THESSALONIKI-PYLAIA

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

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ISRAEL

ISRAEL-KFAR VITKIN

Israel Mitochondrial Diseases Support Group Ori Levi Foundation

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ITALY

LAZIO-ROMA

MITOCON - Insieme per lo Studio e la Cura delle Malattie Mitocondriali ODV

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ERN

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 NICOLÒ

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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MALTA

MALTA-VALLETTA

The National Alliance for Rare Diseases Support - Malta

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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

Andalucía-ALMERÍA

FPF: Fundación Poco Frecuente

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SPAIN

Castilla - León-LEÓN

ALER: Asociación Leonesa de Enfermedades Raras y sin diagnóstico

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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

AEPMI - Asociación de Enfermos de Patologías Mitocondriales

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SPAIN

Madrid-MADRID

Federación Española de Enfermedades Metabólicas Hereditarias

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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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SWITZERLAND

Suisse Alémanique-BERN

Wir Mitos - erwachsene Patienten mit ererbter mitochondrialer Erkrankung

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UNITED KINGDOM

Cheshire-CHESTER

Metabolic Support UK

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UNITED KINGDOM

Cheshire-NORTHWICH

CMDN - Children's Mitochondrial Disease Network

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UNITED KINGDOM

Surrey-WARLINGHAM

The Lily Foundation (mitochondrial disease support)

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UNITED STATES

Michigan-NOVI

MitoAction

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UNITED STATES

Pennsylvania-PITTSBURGH

United Mitochondrial Disease Foundation

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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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FRANCE

PROVENCE-ALPES-COTE D'AZUR-SANARY-SUR-MER

Association Ma Fumarase Mon Energie

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GERMANY

Bremen-BREMEN

BKMF - Bundesverband Kleinwüchsige Menschen und ihre Familien e.V.

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ERN

GERMANY

Niedersachsen-ALGERMISSEN

VKM - Bundesselbsthilfeverband Kleinwüchsiger Menschen e.V.

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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

NETHERLANDS

Noord-Holland-MEDEMBLIK

PKD Contactgroep

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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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SLOVAKIA

Presovsky kraj-BARDEJOV

ZOGO - Zdruzenie Ojedlinelych Genetickych Ochorenie

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SPAIN

Asturias-OVIEDO

asGLUTdiece - Asociación Glut1 y enfermedades que responden a dieta cetogénica

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SWEDEN

Region Stockholm-BROTTBY

Willefonden

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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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FRANCE

CENTRE-VAL DE LOIRE-LA RICHE

Association KJER-France

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GERMANY

Berlin-BERLIN

Fett-SOS e.V. - Selbsthilfegruppe für angeborene Fettsäurenoxidationsstörungen

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NETHERLANDS

Noord-Holland-AMSTERDAM

Cure ADOA Foundation

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CANADA

Québec-CHICOUTIMI

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

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DENMARK

Syddanmark-TONDER

MCADD-Foreningen

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FRANCE

ILE-DE-FRANCE-PARIS

ANPSA - Association Nationale pour les Personnes SourdAveugles

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NETHERLANDS

Utrecht-BAARN

Spierziekten Nederland

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NORWAY

Østlandet-OSLO

Norsk Epilepsiforbund

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SPAIN

Baleares-PALMA DE MALLORCA

ABAIMAR: Associació Balear d'Infants amb Malalties Rares

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SPAIN

Comunidad Valenciana-VALENCIA

De Neu: Asociación de Enfermedades de los Neurotransmisores

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SPAIN

Madrid-ARROYOMOLINOS

Familia GA1

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ERN

UNITED KINGDOM

Greater London-LONDON

Sense (for deafblind people)

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UNITED KINGDOM

Greater London-LONDON

UK Congenital Hypotonia Network

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUXELLES (EVERE)

APEDAF - Association des Parents d'Enfants Déficients Auditifs Francophones A.S.B.L.

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BELGIUM

OOST-VLAANDEREN-GENT

AHOSA vzw - Anders HOren Samen Aanpakken

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BELGIUM

WEST-VLAANDEREN-BRUGGE

Anna Timmerman vzw

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CYPRUS

Cyprus-LIMASSOL

TF - Theotokos Foundation

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FRANCE

HAUTS-DE-FRANCE-LENS

Association Ouvrir Les Yeux

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FRANCE

ILE-DE-FRANCE-PARIS

Association Manon Coeur de Lion

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GERMANY

Nordrhein-Westfalen-BONN

Pro Retina Deutschland e.V.

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ERN

GERMANY

Nordrhein-Westfalen-KÖLN

Nephrokids Nordrhein-Westfalen e.V.

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IRELAND

County Dublin-DUBLIN

Fighting Blindness

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IRELAND

County Dublin-DUBLIN

Stroke Network

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NETHERLANDS

Noord-Brabant-TILBURG

Belangenvereniging LOA/LHON

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NETHERLANDS

Utrecht-UTRECHT

Patiëntengroep LOA/LHON

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NORWAY

Østlandet-OSLO

Landsforbundet for kombinert syns- og hørselshemmede/døvblinde

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PORTUGAL

SUL-LISBOA

ARP - Associação de Retinopatia de Portugal

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SPAIN

Andalucía-SEVILLA

ASANOL: Asociación atrofia de nervio óptico de Leber

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SWEDEN

Region Stockholm-STOCKHOLM

LHON Eye Society

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UNITED KINGDOM

Buckinghamshire-BUCKINGHAM

Retina UK

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UNITED KINGDOM

Cambridgeshire-PETERBOROUGH

Deafblind UK

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UNITED KINGDOM

Essex-HOCKLEY

Leber's Hereditary Optic Neuropathy Society (aka LHON Society)

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UNITED KINGDOM

Hertfordshire-HARPENDEN

AT Society - Ataxia-Telangiectasia Society

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FRANCE

ILE-DE-FRANCE-VILLE-D'AVRAY

Association ACO2 Gene

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FRANCE

OCCITANIE-PORTET SUR GARONNE

CSC - Connaître les Syndromes Cérébelleux

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Alliances and umbrella organisations

AUSTRIA

WIEN

WIEN

Pro Rare Austria - Allianz für seltene Erkrankungen

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AUSTRIA

WIEN

WIEN

Lobby4Kids

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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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BULGARIA

 South-West region

SOFIA

NAPRD: National Alliance of People with Rare Diseases

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CANADA

Ontario

TORONTO

CORD - Canadian Organization for Rare Disorders

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CROATIA

CROATIA

ZAGREB

Hrvatski savez za rijetke bolesti

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CYPRUS

Cyprus

NICOSIA

Cyprus Alliance for Rare Disorders

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DENMARK

Hovedstaden

TAASTRUP

Rare Disorders Denmark

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FINLAND

Finland

HELSINKI

Harvinaiset-verkosto

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FINLAND

Finland

HELSINKI

HARSO - Rare Diseases Alliance of Finland

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FRANCE

ILE-DE-FRANCE

PARIS

Alliance Maladies Rares

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FRANCE

ILE-DE-FRANCE

PARIS

EURORDIS - Rare Diseases Europe

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ERN
FRANCE

ILE-DE-FRANCE

SAINT-MICHEL-SUR-ORGE

SOLHAND - Solidarité Handicap ''autour des maladies rares''

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GERMANY

Berlin

BERLIN

ACHSE - Allianz Chronischer Seltener Erkrankungen e.V.

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GREECE

ATTIKI

ATHENS

PESPA - Greek Alliance for Rare Disease Network

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HUNGARY

Közép-Magyarország

BUDAPEST

HUFERDIS - RIROSZ - Hungarian Federation of People with Rare and Congenital Diseases

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IRELAND

County Dublin

DUBLIN

RDI-Rare Disease Ireland

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IRELAND

County Dublin

DUBLIN

IPPOSI - The Irish Platform for Patient Organisations, Science and Industry

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ITALY

LAZIO

ROMA

UNIAMO FIMR onlus - Federazione Italiana Malattie Rare

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ERN
ITALY

PIEMONTE

TORINO

Federazione Malattie Rare Infantili

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LATVIA

LATVIA

RIGA

Latvian Alliance for Rare Diseases

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MOROCCO

Casablanca

CASABLANCA

Alliance Maladies Rares Maroc

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NETHERLANDS

Utrecht

BAARN

International Mito Patients

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NETHERLANDS

Utrecht

SOEST

VSOP - Vereniging Samenwerkende Ouder- en Patiëntenorganisaties

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POLAND

Warszawa

WARSAW

ORPHAN - Krajowe Forum na rzecz terapii chorób rzadkich

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PORTUGAL

SUL

LISBOA

Fedra - Federação de Doenças Raras de Portugal

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PORTUGAL

SUL

LISBOA

RD-Portugal - União das Associações das Doenças Raras de Portugal,

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ROMANIA

SALAJ

ZALAU

RONARD - Alianta Nationala Pentru Boli Rare Romania Network

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SERBIA

Serbia

BELGRADE

NORBS - Nacionalna organizacija za retke bolesti Srbije

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SLOVAKIA

Bratislavsky kraj

PEZINOK

Slovenska aliancia zriedkavych chorob

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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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SWEDEN

Region Stockholm

SUNDBYBERG

Sällsynta diagnoser Network

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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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UNITED KINGDOM

Greater London

LONDON

Contact - For families with disabled children

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UNITED KINGDOM

Greater London

LONDON

GA UK : Genetic Alliance UK

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UNITED KINGDOM

Greater London

LONDON

RDUK : Rare Disease UK

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UNITED KINGDOM

Greater London

LONDON

SHCA - Specialised Health Care Alliance

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