Navigation path

International Rare Diseases Research Consortium


International Rare Diseases Research Consortium

Maximising scarce resources and coordinating research efforts are key elements for success in the rare diseases field. Worldwide sharing of information, data and samples to boost research is currently hampered by the absence of an exhaustive rare disease classification, standard terms of reference and common ontologies, as well as harmonised regulatory requirements.

The International Rare Diseases Research Consortium (IRDiRC) was initiated by the European Commission and the US National Institutes for Health Research and launched in April 2011 to foster international collaboration in the rare diseases field. IRDiRC will team up researchers and organisations investing in rare diseases research in order to achieve two main objectives, namely to deliver 200 new therapies for rare diseases and means to diagnose most rare diseases by the year 2020.

IRDiRC gathers organisations that share common goals and principles and have agreed to work in a coordinated and collaborative manner within a multinational consortium. A number of grand challenges will need to be addressed through collaborative actions to reach IRDiRC objectives and the 2020 goals

  • establish and provide access to harmonised data and samples;
  • perform the molecular and clinical characterisation of rare diseases;
  • boost translational, preclinical and clinical research.

This collaboration will also require to harmonise the policies related to research utilisation, standardisation, and dissemination. Each organisation will use its own funding mechanism to support rare diseases research.

For more information please see