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Fostering international collaboration on rare diseases research: launch of the International Rare Diseases Research Consortium (IRDiRC)

Berthesda, USA, 5- 8 April 2011

International Rare Diseases Research Consortium

The workshop was co-organised by the European Commission and the US National Institutes of Health. This workshop followed the first USA-EU workshop organised in Reykjavik, October 2010, where it was decided to explore the concept of programme level cooperation for stimulating and steering international collaboration in rare disease research.

The major goal of the workshop in Bethesda was to establish and launch the International Rare Diseases Research Consortium (IRDiRC) to foster international collaboration in rare diseases research.

To develop a policy document framing the international effort, 7 breakout sessions were organised to trigger the discussion on the different policy items:

  1. Understanding Pathophysiology of Rare Diseases

    1a.Genomics analyses
    1b.In vitro and animal models
  2. Ontologies/Disease Classification/Natural History
  3. Biomarkers
  4. Patient Registries and Biospecimen Repositories
  5. Preclinical Research and Clinical Trials
  6. Communication/Publication/Information/Intellectual Property Rights/Data Policy

Some 80 participants from research funding agencies, research organisations, industry, patient representatives and regulatory agencies participated in the workshop.

Research funding agencies represented at the workshop were:

  • European Commission (DG Research and Innovation; DG Health and Consumers)
  • National Institutes of Health - NIH (USA)
  • Canadian Institutes of Health Research - CIHR (Canada)
  • Instituto de Salud Carlos III (Spain)
  • Istituto Superiore di Sanita (Italy)

Please find link to the following documents:

  • Workshop agenda
  • Workshop report
  • List of participants
  • Presentation:
    International Cooperation on Research into Rare Diseases, Ruxandra Draghia-Akli, European Commission

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