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Third workshop of the International Rare Diseases Research Consortium (IRDiRC)

Montreal, Canada, 08-09 October 2011

The third workshop dedicated to the International Rare Diseases Research Consortium (IRDiRC) was held in Montreal, Canada on 8-9 October 2011, following two previous workshops in Reykjavik, Iceland and Bethesda, USA. The workshop was hosted by the Canadian Institutes for Health Research and Genome Canada and co-organised with the European Commission and the US National Institutes of Health.

The Montreal meeting gathered around 100 participants representing public and private funding organisations, scientists, regulators, industry and patient groups. It focused on continuous efforts to develop common scientific and policy frameworks to guide the activities of the participating IRDiRC members.

Several activities are already ongoing or planned and were showcased at the meeting. The establishment of an effective and flexible governance structure was also discussed. It was decided to hold an Interim IRDiRC Executive Committee meeting in Belgium, Brussels in January 2012. One of the meeting's main objectives will be to appoint members to IRDiRC's Scientific Committees. Nominations to these Committees will be accepted from November until the beginning of December 2011.

Please find links to the following documents:

  • Workshop agenda
  • List of Meeting participants


  • IRDiRC objectives and aims of workshop (Stephen Groft, National Institutes of Health (US)(110KB)
  • State the art of IRDiRC (Ruxandra Draghia-Akli, Director, Health Directorate, DG Research and Innovation, European Commission)(11.36MB)
  • IRDiRC governance and next steps (Ruxandra Draghia-Akli, Director, Health Directorate, DG Research and Innovation, European Commission)

Roundtable presentations:
- Update of current and planned actions contribution to IRDiRC by committed funding agencies

  • Paul Lasko - Canadian Institutes of Health Research (Canada)(3.27MB)
  • Pierre Meulien Genome Canada (Canada)(1.73MB)
  • Ruxandra Draghia-Akli- European Commission(676KB)
  • Beatrice de Montleau - French Association against Myopathies (France)(1.65MB)
  • Jean-Michel Heard - French National Research Agency (France)(861KB)
  • Lucia Monaco - Telethon Foundation (Italy)(244KB)
  • Josť Navas - National Institute of Health Carlos III (Spain)(2.66MB)
  • Sonja van Weely - The Netherlands Organisation for Health Research and Development (the Netherlands)(455KB)
  • Steve Groft - National Institutes of Health (US)(1.22MB)

- Scientific Advances Contributing to IRDiRC Objectives

  • Kym Boycott - University of Ottawa (Canada)(6.10MB)
  • Lu Wang - National Human Genome Research Institute (US)(775KB)
  • Shawn Liu - Beijing Genomics Institute (China)(26.76MB)

- International Policy Aspects

  • Bartha Knoppers - McGill University (12.40MB)
  • Jaroslav Waligora - European Commission (744KB)

- Regulatory Challenges in the International Context

  • Jordi Llinares - European Medicines Agency (10.99MB)
  • Anne Pariser - Food and Drug Administration (US) (2.52MB)
  • Debra Lewis - Food and Drug Administration (US) (11.72MB)

- Industry Challenges in the International Context

  • Richard Bergstrom - European Federation of Pharmaceutical Industries and Associations (2.36MB)
  • Miriam Gargesi - European Diagnostics Manufacturers Association (1.54MB)
  • Clarence Young, Novartis Pharma (12.67MB)

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