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EURORDIS - Rare Diseases Europe
EURORDIS - Rare Diseases Europe
1 of 27
THE ADDED VALUE OF CENTERS OF EXPERTISE FOR RARE DISEASES ECRD 2010 Krakow May 14, 2010 Yann LE CAM Chief Executive Officer www.eurordis.org
Content Outline ,[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],[object Object],[object Object],ECRD 2010 Krakow
INTRODUCTION ECRD 2010 Krakow
The principles of social justice and solidarity ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],ECRD 2010 Krakow
Centres of Expertise in National Plans / Strategies ECRD 2010 Krakow ,[object Object],[object Object],[object Object],The concepts of Centres of Expertise & European Reference Networks of Centres of Expertise have been analysed, developped, debated since 2005 … and continue to be, while being progressively adopted in several Member States and in the EU policy.
CENTRES OF EXPERTISE ARE IMPORTANT TO PATIENTS ECRD 2010 Krakow
Patients’ needs: access to diagnosis & care ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],ECRD 2010 Krakow
Patients’ expectations ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],ECRD 2010 Krakow
The Declaration of Common Principles ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],ECRD 2010 Krakow
POLICY ELEMENTS ON CENTRES OF EXPERTISE ECRD 2010 Krakow
The EURORDIS Policy Fact Sheets ECRD 2010 Krakow
The EU Policy Framework ,[object Object],[object Object],[object Object],ECRD 2010 Krakow
The EU Policy Framework ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],ECRD 2010 Krakow
The Definition of Centres of Expertise (CoE) ,[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],ECRD 2010 Krakow
European Reference Network (ERN) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],ECRD 2010 Krakow
The main criteria to identify and select Centres of Expertise ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],ECRD 2010 Krakow
The evaluation of Centres of Expertise ,[object Object],[object Object],[object Object],[object Object],ECRD 2010 Krakow
The organisation of Healthcare Pathways ,[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],[object Object],ECRD 2010 Krakow
The Policy Indicators for Centres of Expertise ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],ECRD 2010 Krakow
THE ADDED VALUE OF CENTRES OF EXPERTISE ECRD 2010 Krakow
Improving quality Healthcare Services for Rare Disease Patients ,[object Object],[object Object],ECRD 2010 Krakow The first added value of Centers of Expertise is to provide timely access to correct diagnosis and most appropriate care practices
A key Determinant of Research on Rare Diseases ,[object Object],[object Object],[object Object],[object Object],ECRD 2010 Krakow
Optimizing Healthcare Resources ,[object Object],[object Object],[object Object],ECRD 2010 Krakow
CONCLUSION ECRD 2010 Krakow
Four Challenges ahead of us ,[object Object],[object Object],[object Object],[object Object],ECRD 2010 Krakow
YES, WE CARE ! ECRD 2010 Krakow
… and YES, WE CAN ! ECRD 2010 Krakow www.eurordis.org

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Session 3 yann_le_cam