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National Plans and Strategies on Rare Diseases in Europe

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Rare Diseases Epidemiology

Part of the book series: Advances in Experimental Medicine and Biology ((AEMB,volume 686))

Abstract

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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Authors and Affiliations

  1. National Centre for Rare Diseases, Istituto Superiore di Sanità, Viale Regina Elena, 299, 00161, Rome, Italy

    Domenica Taruscio

  2. National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy

    Luciano Vittozzi (ChemD)

  3. Centre for Rare Diseases, BAPES, Plovdiv, Bulgaria

    Rumen Stefanov MD, PhD (Associate Professor in Public Health)

Authors
  1. Domenica Taruscio
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  2. Luciano Vittozzi
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  3. Rumen Stefanov MD, PhD
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Corresponding author

Correspondence to Domenica Taruscio .

Editor information

Editors and Affiliations

  1. , Instituto de Investigaciñon en Enfermeda, Instituto de Salud Carlos III, Monforte de Lemos 5, Madrid, 28029, Spain

    Manuel Posada de la Paz

  2. , Office of Rare Diseases Research, National Institutes of Health, Executive Boulevard 6100, Bethesda, 20892-7518, USA

    Stephen C. Groft

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Taruscio, D., Vittozzi, L., Stefanov, R. (2010). National Plans and Strategies on Rare Diseases in Europe. In: Posada de la Paz, M., Groft, S. (eds) Rare Diseases Epidemiology. Advances in Experimental Medicine and Biology, vol 686. Springer, Dordrecht. https://doi.org/10.1007/978-90-481-9485-8_26

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