Search for a rare disease
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26 Result(s)
- 5 Expert centre networks
- 15 Multicentric Research projects
- 1 Multinational clinical trials
- 2 Networks of patient registries
- 2 Networks of biobanks
- 1 Alliances and umbrella organisations
Funded by an IRDiRC member = 
Expert centre networks
HUNGARY
Közép-Magyarország
BUDAPEST
Semmelweis University Centre of Expertise for Rare Diseases
Institute of Genomic Medicine and Rare Disorders, Semmelweis University
FRANCE
PROVENCE-ALPES-COTE D'AZUR
MARSEILLE
Filnemus - French rare diseases Healthcare Network : neuromuscular diseases
CHU de Marseille - Hôpital de la Timone
UNITED KINGDOM
Greater London
LONDON
North Start Clinical Network for paediatric neuromuscular disease
UCL Institute of Child Health, University College London
UNITED KINGDOM
Tyne & Wear
NEWCASTLE UPON TYNE
EURO-NMD: European Reference Network for Rare Neuromuscular Diseases
Newcastle upon Tyne Hospitals NHS Trust
GERMANY
Baden-Württemberg
TÜBINGEN
ERN-RND: European Reference Network on Rare Neurological Diseases
Institut für Medizinische Genetik und angewandte Genomik Tübingen
Multicentric Research projects
FRANCE
PROVENCE-ALPES-COTE D'AZUR
MARSEILLE
NEMMYOP: functional characterisation of the nemaline myopathy in a murine model with the nebulin mutation: moving from basic understanding towards therapeutic interventions
Université de médecine Aix-Marseille Université
NETHERLANDS
Noord-Holland
AMSTERDAM
TREAT-NEMMYOP: Fast Skeletal Troponin Activation for Restoring Muscle Strength in Mouse Models of Nemaline Myopathy: a Molecular, Cellular, Metabolic and Functional Assessment
Amsterdam UMC, locatie VUmc
GERMANY
Baden-Württemberg
TÜBINGEN
Neuromics: Integrated European -omics research project for diagnosis and therapy in rare neuromuscular and neurodegenerative diseases
Institut für Medizinische Genetik und angewandte Genomik Tübingen
FRANCE
AUVERGNE-RHONE-ALPES
ADDRESS: NOT PROVIDED - FR
NMD-CHIP: Development of targeted DNA-Chips for High Throughput Diagnosis of NeuroMuscular Disorders
Institution: Information not provided - FR
FRANCE
AUVERGNE-RHONE-ALPES
CLERMONT-FERRAND
MYORES: European Muscle Development Network (FINISHED)
Faculté de médecine de Clermont-Ferrand
FRANCE
PROVENCE-ALPES-COTE D'AZUR
MARSEILLE
NMD-CHIP: development of targeted DNA-chips for high throughput diagnosis of neuromuscular disorders
CHU de Marseille - Hôpital de la Timone
GERMANY
Berlin
BERLIN
EUROMUSCLENET: Europäisches Informations-Netzwerk über muskuläre Erkrankungen
Charité / Max-Delbrück-Centrum für Molekulare Medizin
UNITED KINGDOM
Tyne & Wear
NEWCASTLE UPON TYNE
TREAT-NMD: Accelerating Treatments for Neuromuscular Diseases (research)
Newcastle upon Tyne Hospitals NHS Trust
CANADA
Colombie-Britannique
VANCOUVER
Maternal Infant Child and Youth Research Network (MICYRN)
University of British Columbia
FRANCE
ILE-DE-FRANCE
PARIS
STaHR : Stimulation of Targeted Homologous Recombination for Gene Therapy
Muséum National d'Histoire Naturelle
FRANCE
PAYS DE LA LOIRE
NANTES
FROGH : FRench Regional Origins in Genetics for Health
Institut de Recherche en Santé - Université de Nantes
GERMANY
Bayern
MÜNCHEN
BNE: BrainNet Europe II: European brain tissue bank
Zentrum für Neuropathologie und Prionforschung (ZNP)
ITALY
LAZIO
ROMA
UnRareNet: a muticenter collaborative research network for the identification and study of rare undiagnosed patients (completed)
IRCCS Ospedale Pediatrico Bambino Gesů - SEDE GIANICOLO
SPAIN
Cataluńa
L'HOSPITALET DE LLOBREGAT
CIEN: Spanish Network for Cooperative Research in Neurological diseases
Hospital Universitari de Bellvitge
Multinational clinical trials
FRANCE
ILE-DE-FRANCE
PARIS
Nemucough : Evaluation of a Mechanical Insufflation-Exsufflation Device During Acute Respiratory Failure in Patients With Neuromuscular Disorders: a Prospective, Randomized, Controlled, Multicenter Study (Phase III) (coordination)
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Networks of patient registries
SPAIN
Cataluńa
BARCELONA
NMD-ES: Spanish Registry of Neuromuscular Diseases
Hospital de la Santa Creu i Sant Pau
UNITED KINGDOM
Tyne & Wear
NEWCASTLE UPON TYNE
TREAT-NMD: Accelerating Treatments for Neuromuscular Diseases (registries)
Newcastle upon Tyne Hospitals NHS Trust
Networks of biobanks
GERMANY
Bayern
MÜNCHEN
Brain-Net Germany : National network of brain banks in Germany
Zentrum für Neuropathologie und Prionforschung (ZNP)
ITALY
LIGURIA
GENOVA
