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Content archived on 2024-06-25

ERA-Net for research programmes on rare diseases

Objective

There are at least 6000 to 7000 distinct rare diseases, the great majority of them being of genetic origin. Although individually rare, taken together, rare diseases affect at least 20 millions persons in Europe and represent a major issue in health care since a large percentage of these diseases lead to a significant decrease of life expectancy, and most of them cause chronic illness with a large impact on quality of life and the health care system. The status of knowledge on the different rare diseases is heterogeneous, while evidence based therapy is available only for a very small minority of them. Therefore further research on rare diseases is badly needed but is hampered by lack of resources at several levels. (1) Few scientists work on one specific disease. (2) There are few patients scattered over a large geographic area, causing difficulties to gather cohorts required for studies. (3) Usually existing databases and material collections are local and small, they are not accessible or standardised. (4) Diseases often have complex clinical phenotypes and require interdisciplinary approaches to treatment and interdisciplinary cooperation for research. In order to ameliorate these problems the EU-member states France, Germany and Spain have recently created national programmes explicitly dedicated to support research on rare diseases and to enhance networking among scientists in the field of rare diseases. The first and main objective of this Specific Support Action is to explore possibilities for creating synergies by transnational coordination and cooperation between these three partners. Since research on rare diseases is usually integrated into programmes defined either by indication or by methodological approaches the second objective of the SSA is to identify further possible partners from other countries who manage part of national programmes on rare diseases and to recruit them to join ERA-Net.

Call for proposal

ERA-NET/1/CA-SSA
See other projects for this call

Coordinator

INSTITUT NATIONAL DE LA SANTÉ ET DE LA RECHERCHE MÉDICALE
EU contribution
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Address
101 rue de Tolbiac
PARIS
France

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Participants (2)