Support for international rare disease research to.. (SUPPORT-IRDiRC)
Support for international rare disease research to serve the IRDiRC objectives
Start date: Oct 1, 2012,
End date: Sep 30, 2018
Research into rare diseases (RD) is badly needed as many patients still lack a proper diagnosis and most of them are left without an effective treatment. In addition, research in this area is very relevant from a scientific point of view as RD are model diseases for more common disorders and are strong drivers of innovation. However, research in this field faces some specific constraints stemming from the low prevalence that represents the defining characteristic of RD, the sheer number of RD and their high phenotypic heterogeneity.It is now recognised that a global coordination of efforts is necessary to avoid duplication, fragmentation, redundancy and gaps in RD research, and to ensure that the results obtained can be rapidly translated into diagnostics and treatments to benefit patients. This awareness has led to the launch of IRDiRC, whose mission is to coordinate and foster international collaborative research on RD, with the ambitious objectives of developing 200 new therapies and producing diagnostic tools for a majority of RD by 2020.The objective of SUPPORT-IRDiRC is to provide organisational and communication support to IRDiRC and thereby contribute to the development of policies and guidelines aimed at accelerating research on RD and reinforcing international research cooperation. To this aim, SUPPORT-IRDiRC has gathered together a group of motivated and highly experienced investigators who will work together during 6 years to help IRDiRC members remain on the right track in order to reach its ambitious objectives.SUPPORT-IRDiRC will work in close collaboration with the European Commission, research funding agencies from all countries involved, as well as with research projects contributing to the achievement of IRDiRC objectives, with a special focus on projects funded under HEALTH-2012.2.1.1-1-B & C, to which we will provide all the necessary support services and tools in order to make sure that key results are shared and widely disseminated.
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