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Conference 4 - The patient experience in the development and implementation of National Plans for Rare Diseases in France

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EURORDIS - Rare Diseases Europe
EURORDIS - Rare Diseases Europe

"The patient experience in the development and implementation of National Plans for Rare Diseases in France" Christel Nourissier EURORDIS General Secretary & Member of the EU Comittee of Experts on Rare Diseases EUROPLAN advisor

Health & Medicine
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The patient experience in the development and implementation of National Plans for Rare Diseases in France : EURORDIS Membership Meeting Amsterdam, May 14, 2011 www.eurordis.org Christel Nourissier EURORDIS General Secretary & Member of the EU Comittee of Experts on Rare Diseases EUROPLAN advisor
Painful years of hard work might now look like a success story… ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Amsterdam, May 14, 2011
1. No policy without us ,[object Object],[object Object],[object Object],[object Object],Amsterdam, May 14, 2011
1. No policy without us (II) ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Amsterdam, May 14 2011
2. Not one single patient living with a rare disease should be denied access to diagnosis and care at an expert centre ,[object Object],[object Object],[object Object],[object Object],[object Object],Amsterdam, May 14, 2011
3. Collect and make the best use of our clinical data, DNA, and biological samples ,[object Object],[object Object],[object Object],[object Object],Amsterdam, May 14, 2011
4. Patients need innovation : coordinate and fund research ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Amsterdam, May 14, 2011
5. The French National Plans: A message of hope in an adverse economic context : ,[object Object],[object Object],[object Object],[object Object],Amsterdam, May 14, 2011
5. A strong message of hope for patients not only in France, but all over Europe and the world ,[object Object],[object Object],[object Object],Amsterdam, May 14, 2011
All stakeholders agree that National plans in France improve the situation of patients Amsterdam, May 14, 2011

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Conference 4 - The patient experience in the development and implementation of National Plans for Rare Diseases in France

  • 1. The patient experience in the development and implementation of National Plans for Rare Diseases in France : EURORDIS Membership Meeting Amsterdam, May 14, 2011 www.eurordis.org Christel Nourissier EURORDIS General Secretary & Member of the EU Comittee of Experts on Rare Diseases EUROPLAN advisor
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  • 10. All stakeholders agree that National plans in France improve the situation of patients Amsterdam, May 14, 2011