Saturday, 28 May 2016

  • To view videos of the plenary sessions and speakers’ presentations, please click on the name of the speakers below and the coloured bars at the bottom of this page. Only presentations authorised by the speakers are available.

    Click here for the Programme at a glance

    08.30-17.00 Registration open

    09.00-10.30 Choose from 6 parallel sessions (Click bars below)

    10.30-11.00 Coffee break, posters and exhibition

    11.00-12.30 Choose from 6 parallel sessions (Click bars below)

    12.30-14.00 Lunch, posters and exhibition

    12.30-14.00 eHealth for Clinicians lunch session

    14.00 – 15.30 Choose from 6 parallel sessions (Click bars below)

    15.45-17.00 Closing Plenary

    Session Chair: Avril Daly, Vice-President EURORDIS, Chair,
    Genetic and Rare Disorders Organisation (GRDO) Ireland, CEO,
    Retina International, Ireland

    Closing remarks (video), George Freeman, Minister for Life Sciences, UK

    My learnings and takeaways from this conference, Tom Koukoulis, UK Thalassaemia Society (UKTS), UK

    Key take-home messages & panel discussion:

    Theme 1: Hugh Dawkins, Director, Office of Population Health
    Genomics, Department of Health Western Australia, Australia

    Theme 2: Alastair Kent, Director, Genetic Alliance UK, UK

    Theme 3: Ri de Ridder, Director General, RIZIV-INAMI, Belgium, Ana
    Palma, Global HTA & Patient Access Lead, Sobi, Belgium and Bruno
    Sepodes, Chair COMP, Professor, University of Lisbon, Portugal

    Theme 4: Matt Johnson, Healthcare and Research Director,
    EURORDIS, Belgium and Till Voigtländer, Clinical Institute of
    Neurology, Medical University of Vienna, Austria

    Theme 5: Dorica Dan, Board of Officers, Board of Directors
    EURORDIS, President, Romanian Prader Willi Association, Romania

    Theme 6: Durhane Wong Rieger, President, CORD, Canada

    Closing remarks: Avril Daly, Vice-President EURORDIS, Chair,
    Genetic and Rare Disorders Organisation (GRDO) Ireland, CEO,
    Retina International, Ireland

    17.00-17.30 Informal farewell coffee break

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

    THEME 1 : Game Changers in Research

    THEME 2 : Game Changers in Diagnosis

    THEME 3 : Game Changers in Drug Development, Authorisation and Access

    THEME 4 : Game Changers in Care Provision

    THEME 6 : Game Changers in Global Society

    THEME 7 : In Partnership with Patients