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Patient organisations

CYPRUS

Cyprus-LIMASSOL

Association of Patients with Inherited Metabolic Diseases "ASPIDA ZOIS"

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UNITED KINGDOM

Surrey-WARLINGHAM

The Lily Foundation (mitochondrial disease support)

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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

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 à 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-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 CORUÑA

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

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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AUSTRALIA

New South Wales-SURRY HILLS

Mito Foundation

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CANADA

Alberta-CALGARY

MitoCanada Foundation

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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

OCCITANIE-SAINTE FOY DE PEYROLIÈRES

AMMi - Association contre les Maladies Mitochondriales

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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

SPAIN

Castilla - León-LEÓN

ALER: Asociación Leonesa de Enfermedades Raras y sin diagnóstico

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SPAIN

Madrid-MADRID

AEPMI - Asociación de Enfermos de Patologías Mitocondriales

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SWITZERLAND

Suisse Alémanique-BERN

Wir Mitos - erwachsene Patienten mit ererbter mitochondrialer Erkrankung

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UNITED KINGDOM

Cheshire-NORTHWICH

CMDN - Children's Mitochondrial Disease Network

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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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CANADA

Ontario-TORONTO

Vaincre la cécité Canada

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FINLAND

Finland-HELSINKI

Näkövammaisten liitto ry

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FRANCE

HAUTS-DE-FRANCE-MARCQ EN BAROEUL

ANPEA - Association Nationale des Parents d'Enfants Aveugles

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FRANCE

ILE-DE-FRANCE-CHEVILLY-LARUE

Association Act to see

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FRANCE

ILE-DE-FRANCE-PARIS

AVH - Association Valentin Haüy pour le bien des aveugles et des malvoyants

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FRANCE

OCCITANIE-COLOMIERS

Association Retina France

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GERMANY

Berlin-BERLIN

BEBSK - Bundesvereinigung Eltern blinder und sehbehinderter Kinder e.V.

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GERMANY

Berlin-BERLIN

VfASS - Verein für angeborene Stoffwechselstörungen e.V.

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GERMANY

Nordrhein-Westfalen-DÜSSELDORF

BFS - Bund zur Förderung Sehbehinderter e.V.

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GREECE

ATTIKI-ATHENS

HRS - Hellenic Retina Society

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IRELAND

County Dublin-DUBLIN

Fighting Blindness

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LUXEMBOURG

LUXEMBOURG-CANACH

ADV - Association pour déficients visuels

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PORTUGAL

SUL-LISBOA

ARP - Associação de Retinopatia de Portugal

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SPAIN

Madrid-MADRID

APASCIDE:Asociación Española de Familias de Personas con Sordoceguera

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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

GERMANY

Baden-Württemberg-FREIBURG

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

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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 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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NETHERLANDS

Overijssel-ZWOLLE

VKS - Volwassenen, Kinderen en Stofwisselingsziekten

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PORTUGAL

SUL-CAPARICA

APCDG - 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

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

Latvijas Reto slimibu alianse

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MOROCCO

Casablanca

CASABLANCA

Alliance Maladies Rares Maroc

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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

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

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PORTUGAL

SUL

PORTELA

FEDRA - Federação de 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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NETHERLANDS

Utrecht

BAARN

International Mito Patients

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SPAIN

Madrid

MADRID

Acción Visión España

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