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E-Rare Report on rare diseases research funding in Europe and beyond

E-Rare Report on rare diseases research funding in Europe and beyond

Rare diseases represent an important burden to public-health, affecting 26-30 million persons across Europe. From a scientific standpoint, most of these diseases remain a major challenge.  The fragmentation of resources and research efforts represent the major threat for rare disease research, underscoring the need for a coordinated European and international approach. Therefore, in 2009, the European Council recommended to identify the ongoing research and the research resources in the national and Community frameworks in order to map and improve the coordination of rare diseases research. In response to this recommendation, each of the 27 member states has been committed to elaborate and adopt a national plan/strategy for rare diseases at the end of 2013, including their plans and earmarked budgets for rare diseases research.
With the recent launch of the International Rare Diseases Research Consortium (IRDiRC), several major funding bodies from Europe and beyond (e.g. EC, NIH, etc.) determined to take a new step towards harmonization and funding of research efforts in the field of rare diseases. Indeed, IRDiRC has the ambitious goal of fostering the development of 200 new therapies and diagnostics for rare diseases by 2020. Such a large-scale initiative implies a high degree of coordination, which requires a detailed picture of rare diseases research funding on a global scale. However, until now, such information was not available. Although previous surveys were carried out by patient associations (ie. Rare Disease UK (RDUK) and Eurordis), they were not focused on research funding and policies. Therefore, based on the lack of available data and the urgent need for better harmonization, the E-Rare-2 consortium conducted a survey as part of Workpackage 2 that was focused on research investments as well as policies. All together, these data should allow the identification of potential synergies, strengths and possible gaps in rare disease research in Europe and beyond.

E-Rare 2012 - Created by Toussaint Biger