"Survey and Strategic Analysis on Future Themes and Needs for Rare Diseases Research Funding"
In the European Council recommendation on rare diseases (RD), Member States are advised on the one hand to identify needs and priorities for basic, clinical, translational and social research in the field of rare diseases, and, on the other hand, to identify ongoing research and research resources in the national and Community frameworks in order to improve coordination, assess the research context and establish the state of the art of rare disease research. This overlaps with the aims of the ERA-Net “E-Rare” consortium of national research funding bodies to influence research policies at both national and European level by providing information to fill the current gaps in this field and develop a strategic research agenda.
To produce this kind of information, E-Rare has performed a survey about priorities for research on RD and an analysis of the potential bottlenecks that could have a negative impact on the development of the rare diseases research activities. The survey results were presented and discussed with experts from the field at the E-Rare workshop “Future Themes and Needs of Rare Disease Research Funding” held in Brussels on July 1st 2009.
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