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Collaborating Partners

BELGIUM

    Samantha Parker
    Joint EBE-EuropaBio Task Force on Rare Diseases and Orphan Drugs

FRANCE

    Jamie Levey
    European Huntington's Disease Network (Euro-HD Network)

    Agnès Bloch-Zupan
    University of Strasbourg

    Guillaume Bassez
    DM scope registry (Myotonic dystrophy survey and communication platform); Hopital Henri Mondor

    Vanessa Ferreira
    Lysogene

    Ha Trang
    French Center of reference for Central Hypoventilation syndrome

    François-Noel Gilly
    University Hospital of Lyon Sud

GREECE

    Marianna Labrou
    Greek Alliance for Rare Diseases

GERMANY

    Holm Graessner
    University of Tübingen

    Hermann Heimpel
    German Registry of congenital dyserythropoietic anemia (CDA); University of Ulm

    Wilhelm Kirch and David Pittrow
    Technische Universität Carl Gustav Carus, Medizinische Fakultät - Dresden

ITALY

    Valter Dal Pos
    European Association Friends of McCune Albright Syndrome (EAMAS)

    Paola Facchin
    Coordinator of Italian Interregional Group on Rare Diseases, Coordinator of Veneto Registry of Rare Diseases, University of Padua

    Bruno Bembi, Laura Deroma
    Regional Coordination Centre for Rare Diseases, University Hospital of Udine, Friuli Venezia Giulia

    Antonella Sidoti, Rosalia D'Angelo
    Univesity of Messina

HUNGARY

    Sandor Janos
    Pécs University,Institute of Applied Health Science (IAHS)

NORWAY

    Oivind Juris Kanavin
    FRAMBU National Centre for rare disorders

ROMANIA

    Dorica Dan, Simona Dimitriu
    Romanian National Alliance for Rare Diseases (RONIARD)

    Brindusa Capilna
    County Clinic Hospital Targu Mures

SPAIN

    Ramon Martì
    Vall d’Hebron Institut de Recerca

UK

    Edmund Jessop
    National Commissioning Group(NCG) - London Strategic Health Authority

    Anil Mehta
    University of Dundee

    Faisal Ahmed
    University of Glasgow

CROATIA

    Ingeborg Barisic
    European Surveillance of Congenital Anomalies(EUROCAT) Steering Committee
    University of Zagreb

ARMENIA

    Albert Matevosyan
    Neurohereditary Diseases Charity Association

GEORGIA

    Karaman Pagava
    Tbilisi State Medical University

    Oleg Kvlividze
    Georgian Foundation for Genetic and Rare Diseases (GeRaD)

RUSSIA

    Svetlana Karimova
    National Association of Organization of Patients with Rare Diseases "Genetics" (Russia)

    Irina Myasnikova
    NGO Help to CF patients

    Eugeny K. Ginter
    Russian Academy of Medical Sciences, Centre for Medical Genetics

UKRAINE

    Vitaliy Matyushenko
    Charitable foundation children with spinal muscular atrophy CSMA

EU

    Jaqueline Van Rens
    European Cystic Fibrosis Society Patient Registry (ECFSPR), EU

USA

    Yaffa Rubinstein
    Office for Rare Diseases Research (ORDR) - National Institutes of Health (NIH)

CHINA

    Li Dingguo
    Rare Diseases Society – Shanghai Medical Association

INDUSTRY

    Maria Madison
    Global Outcomes Survey , Shire
    Susanna Leto di Priolo
    Novartis Oncology
    Shira Kramer
    Global Epi Research

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