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Reykjavik Workshop on rare diseases research

Reykjavik, Iceland, 27-28 October 2010

The workshop was co-organised by the European Commission, Health Directorate, DG Research and Innovation and the US National Institutes of Health to explore international cooperation in rare disease research. Scientists from leading organisations in the field, industry and patient representatives, and regulatory bodies from both Europe and the USA were brought together to take stock of the ongoing activities on either side, to identify areas that would most benefit from trans-Atlantic and international cooperation, and to reflect on potential strategies and contributors for implementation.

Both funding agencies decided to launch an International Rare Diseases Research Consortium (IRDiRC).

It was decided that a second workshop, devoted to the preparation of the IRDiRC policy framework would take place in Washington on 5-8 April 2011. Top scientists and representatives of funding agencies from all over the world were invited to contribute to the drafting of the policy document that will frame this important international initiative.

  • Workshop agenda:
  • Workshop report:
  • List of participants:
  • Presentations:
    Fostering Trans-Atlantic Cooperation on Research into Rare Diseases, Ruxandra Draghia-Akli, European Commission
    International research collaboration on rare diseases - governance mechanisms, Jacques Remacle, European Commission

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