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Workshop 4 - "EURORDIS Research Policy recommendation"

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EURORDIS - Rare Diseases Europe
EURORDIS - Rare Diseases Europe

Workshop 4 - Research "EURORDIS Research Policy recommendation" Béatrice de Montleau, AFM / EURORDIS

1  sur  16
“ Why Research on Rare Diseases” EURORDIS’ position paper Beatrice de Montleau Board member EURORDIS Amsterdam, 14 May 2011 www.eurordis.org
CONTENTS ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
History of research on RD within Eurordis ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
History of this Position Paper ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
History of this Position Paper ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
AIMS of the paper ,[object Object],[object Object],[object Object]
AIMS of the paper ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Part 1 – Ethical and social justice ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Part 1 (2) Part 1 – Ethical and social justice
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Part 2 Part 2 – The economic argument
[object Object],[object Object],[object Object],[object Object],Part 2 (2) Part 2 – The economic argument
[object Object],[object Object],[object Object],Part 3 Part 3 – Scientific trends
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Part 4 Part 4 – The way forward
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Part 4 (2) Part 4 – The way forward
[object Object],[object Object],[object Object],Conclusion: Patient involvement, a prerequisite
[object Object],[object Object],[object Object],Dissemination

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  • 1. “ Why Research on Rare Diseases” EURORDIS’ position paper Beatrice de Montleau Board member EURORDIS Amsterdam, 14 May 2011 www.eurordis.org
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Notes de l'éditeur

  1. With this slide want to underline the fact that for several years Eurordis has been advocating for RD research in EU. We can acknowledge several achievements but because of the high number of RD and the fact that research on most of them does not exist or is at very different stages of progress, the whole panel of instruments and efforts is still required and will be required for many and many years in the future.