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  • EU Funded Projects

    Print | Friday 6 January 2012 | 14,615 views

    Rare diseases have been established as a priority field of the European Union public health policy. The small number of individual patients and the lack of experience and knowledge make the rare diseases an area with a significant added value for activities on EU level. To foster international partnerships and research projects the European Commission has defined the rare diseases as a priority area in the 6th and 7th Framework Programmes, as well as the 1st EU Public Health Programme.

    BAPES has significant experience and reputation on EU level through its participation in planning and implementing some of the most important EU rare diseases projects:

    – as a monobeneficiery

    – 2008: 4EEC RDOD (4th Eastern European Conference for Rare Diseases and Orphan Drugs “Together for Integrative Approach to Rare Diseases”)

    – as an associated partner

    – 2007-2010 RD PORTAL 1 (Orphanet)
    – 2008-2011 EUROPLAN (European Project for Development of National Plans for Rare Diseases)
    – 2010-2011 RD PORTAL 2 (Orphanet)
    – 2010-2013 BURQOL-RD (Social Economic Burden and Health-Related Quality of Life in Patients with Rare Diseases in Europe)
    – 2011-2013 EPIRARE (European Platform for Rare Diseases Registries)
    – 2013-2015 STORE (Story Telling On medical REcords)
    – 2013-2016 RARE Best Practices (Best Practices for Rare Diseases)

    – as  a collaborating parner

    – 2011-2014 Orphanet Europe Joint Action

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