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Funded by an IRDiRC member =

Expert centre networks

IRELAND

County Dublin
DUBLIN

Irish Traveller Network
Our Lady's Children's Hospital

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HUNGARY

Közép-Magyarország
BUDAPEST

Semmelweis University Centre of Expertise for Rare Diseases
Institute of Genomic Medicine and Rare Disorders, Semmelweis University

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FRANCE

PAYS DE LA LOIRE
ANGERS

BRAIN-TEAM - French rare diseases Healthcare Network : rare diseases of the central nervous system with a cognitive or motor expression
CHU d'Angers

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FRANCE

RHONE-ALPES
BRON

DéfiScience - French rare diseases Healthcare Network : rare brain developmental defects and intellectual deficiency
CHU de Lyon HCL - GH Est

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Multicentric Research projects

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Funded by an IRDiRC memberEFACTS - EUROFA: European Friedreich's ataxia consortium for translational studies
Erasme Hospital - ULB

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GERMANY

Nordrhein-Westfalen
AACHEN

GeNeMove: German Network of Hereditary Movement Disorders
Universitätsklinikum Aachen

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GERMANY

Nordrhein-Westfalen
AACHEN

Funded by an IRDiRC memberNICOFA : Nicotinamide for the treatment of Friedreich ataxia
Universitätsklinikum Aachen

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SPAIN

Comunidad Valenciana
VALENCIA

BioMeder - Genes, proteins and signaling pathways in rare diseases
Instituto de Biomedicina de Valencia (CSIC)

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GERMANY

Hessen
WIESBADEN

Funded by an IRDiRC memberInNerMeD-I-Network: Inherited NeuRoMetabolic Diseases Information Network
HSK, Dr. Horst Schmidt Kliniken GmbH

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FRANCE

ILE-DE-FRANCE
PARIS

SPATAX: European network for hereditary spinocerebellar degenerative disorders
CHU Paris-GH La Pitié Salpêtrière-Charles Foix - Hôpital Pitié-Salpêtrière

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FRANCE

LANGUEDOC-ROUSSILLON
MONTPELLIER

Funded by an IRDiRC memberEuro-SCAR: Nosology and molecular diagnosis of the degenerative recessive ataxias
IURC - Institut Universitaire de Recherche Clinique

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GERMANY

Baden-Württemberg
TÜBINGEN

Funded by an IRDiRC memberPREPARE : Preparing for therapies in autosomal recessive ataxias
Hertie-Institut für klinische Hirnforschung (HIH)

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GERMANY

Bayern
MÜNCHEN

BNE: BrainNet Europe II: European brain tissue bank
Zentrum für Neuropathologie und Prionforschung (ZNP)

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ITALY

LAZIO
ROMA

ITASPA: clinical and genetic analysis of spastic paraplegias
Fondazione EBRI

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SPAIN

Cataluña
L'HOSPITALET DE LLOBREGAT

CIEN: Spanish Network for Cooperative Research in Neurological diseases
Hospital Universitari de Bellvitge

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CANADA

Colombie-Britannique
VANCOUVER

Maternal Infant Child and Youth Research Network (MICYRN)
University of British Columbia

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GERMANY

Baden-Württemberg
TÜBINGEN

Funded by an IRDiRC memberNeuromics: Integrated European -omics research project for diagnosis and therapy in rare neuromuscular and neurodegenerative diseases
Institut für Medizinische Genetik und angewandte Genomik Tübingen

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ITALY

LAZIO
ROMA

UnRareNet: a muticenter collaborative research network for the identification and study of rare undiagnosed patients (completed)
IRCCS Ospedale Pediatrico Bambino Gesù - SEDE GIANICOLO

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GERMANY

Baden-Württemberg
TÜBINGEN

Ataxia Study Group (ASG)
Institut für Medizinische Genetik und angewandte Genomik Tübingen

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GERMANY

Nordrhein-Westfalen
BONN

Competence Network Degenerative Dementias
Universitätsklinikum Bonn

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UNITED KINGDOM

Greater London
LONDON

DENDRON - north Thames region: Dementias & Neurodegenerative Diseases Research Network
Camden Mews Day Hospital

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UNITED KINGDOM

Greater Manchester
MANCHESTER

DENDRON - north west region: Dementias & Neurodegenerative Diseases Research Network
Wythenshawe Hospital

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UNITED KINGDOM

Hampshire
SOUTHAMPTON

DENDRON - south coast region: Dementias & Neurodegenerative Diseases Research Network
Moorgreen Hospital

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UNITED KINGDOM

Norfolk
NORWICH

DENDRON - east Anglia region: Dementias & Neurodegenerative Diseases Research Network
Julian Hospital

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UNITED KINGDOM

Oxfordshire
OXFORD

DENDRON - Thames valley region: Dementias & Neurodegenerative Diseases Research Network
The Churchill Hospital

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UNITED KINGDOM

Somerset
BATH

DENDRON - south west region: Dementias & Neurodegenerative Diseases Research Network
St Martin's Hospital

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UNITED KINGDOM

Tyne & Wear
NEWCASTLE UPON TYNE

DENDRON - north east region: Dementias & Neurodegenerative Diseases Research Network
Newcastle General Hospital

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LUXEMBOURG

LUXEMBOURG
LUXEMBOURG

Alzheimer Europe: base de données européenne sur les formes rares de démence
Alzheimer Europe Office

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GERMANY

Niedersachsen
GÖTTINGEN

Funded by an IRDiRC memberEUROSPIN: European consortium on synaptic protein networks in Neurological and Psychiatric diseases
Max-Planck-Institut für experimentelle Medizin

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Multinational clinical trials

CANADA

Ontario
WESTON

An Open-label, Single Treatment, Safety and Efficacy, Long-term Study of Deferiprone in Subjects With Friedreich's Ataxia (Phase II) (coordination)
Apotex Inc.

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CANADA

Ontario
WESTON

A Six-Month Double-Blind, Randomized, Placebo-Controlled Study Investigating the Safety and Tolerability of Deferiprone in Patients With Friedreich's Ataxia (Phase I-II) (coordination)
Apotex Inc.

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Networks of biobanks

GERMANY

Bayern
MÜNCHEN

Brain-Net Germany : National network of brain banks in Germany
Zentrum für Neuropathologie und Prionforschung (ZNP)

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ITALY

LIGURIA
GENOVA

TELETHON NETWORK OF GENETIC BIOBANKS
IRCCS Istituto G. Gaslini - Ospedale Pediatrico

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