Friday 9 may 2014

  • Consult the programme

    • 09.00 – 09.45
    • Opening Session

      Rubin Room (Level -1)

      Welcome address and opening remarks by organisers:

      Avril Daly, Vice-President EURORDIS, Chair of Rare Diseases Ireland GRDO, CEO Fighting Blindness, Ireland
      Jytte Lyngvig, Director, DIA Europe

      Keynote Addresses:

      Annette Widmann-Mauz, Parliamentary State Secretary, Federal Ministry of Health, Germany
      Christoph Nachtigäller, President, German National Alliance for Chronic Rare Diseases (ACHSE), Germany
      Irene Norstedt, Head of Unit, Personalised Medicine, Directorate for Health Research at the DG Research & Innovation, European Commission
      Lesley Greene, Vice-Chair COMP, Vice-President, CLIMB, Co-Chair Programme Committee ECRD 2014, UK

      The Opening Session will be simultaneously interpreted from English into 5 languages: German, French, Spanish, Polish and Russian

    • 09.45 – 10.15
    • Coffee break

    • 10.15 – 12.00
    • Plenary Session

      Session Anchor: Durhane Wong Rieger, President, CORD, Canada

      Rubin Room (Level -1)

      Results of the European Commission implementation report on the Council Recommendation on Rare Diseases

      John F. Ryan, Director Public Health, DG Health & Consumers, European Commission, EU

      Round table discussion: The main challenges that remain in the areas of organisation of healthcare, research and the development and availability of orphan medicinal products in Europe

      Ségolène Aymé, Emeritus, Director of Research, Director of International Affairs, ORPHANET-INSERM, France
      Kate Bushby, Professor of Neuromuscular Genetics, MRC Centre for Neuromuscular Diseases, Institute of Genetic Medicine, International Centre for Life, Newcastle Upon Tyne Hospital, UK
      Pauline Evers, EGAN (European genetic alliances network), Dutch Federation of Cancer Patient Organisations, The Netherlands
      Wills Hughes-Wilson, Chair of Task Force for Rare Diseases & Orphan Drugs of EuropaBio-EBE, Vice President External Affairs, Chief Patient Access Officer, sobi (Swedish Orphan Biovitrum AB), Sweden
      Tsveta Schyns, European Network for Research on Alternating Hemiplegia (ENRAH), Belgium
      Bruno Sepodes, Chair, Committee for Orphan Medicinal Products (COMP), University of Lisbon, Portugal

      The Plenary Session will be simultaneously interpreted from English into 5 languages: German, French, Spanish, Polish and Russian

    • 12.00 – 13.00
    • Lunch

    Please click on the bars below to see a detailed agenda per theme.

    THEME 1 : Improving Healthcare Services

    THEME 2 : Knowledge Generation & Dissemination

    THEME 3 : Research from Discovery to Patients

    THEME 4 : State of the Art and Innovative Practices in Orphan Products

    THEME 5 : Emerging Concepts & Future Policies for Rare Disease Therapies

    THEME 6 : Beyond Medical Care