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

 

Kommentar verfassen

Ihre E-Mail-Adresse wird nicht veröffentlicht. Erforderliche Felder sind mit * markiert.