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Adv Exp Med Biol. 2010;686:475-91. doi: 10.1007/978-90-481-9485-8_26.

National plans and strategies on rare diseases in Europe.

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National Centre for Rare Diseases, Istituto Superiore di Sanità, Viale Regina Elena, Rome, Italy.


This analysis of national plans and strategies on RD in Europe shows that a few countries have already set up national plans. Existing national plans show a good consistency, but also a quite different stage of progress, depending on start date as well as on resource allocation. Several other EU countries have launched actions on RD, often with a considerable strategic effort; however, such initiatives are yet not integrated in a consistent national strategy taking into account the EC recommendations. The project EUROPLAN represents a major initiative to support the development of a shared strategy on RD at EU and Member State level; critical steps include the comparative evaluation of existing plans and actions, identification of gaps and achievements, the development of consensus indicators, as well as the integration of successful national achievements within the EU strategy.

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