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Biobanks: Patients’ Role and Expectations

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BBMRI Stakeholder's Forum
BBMRI Stakeholder's Forum

Fabrizia BIGNAMI, PhD Eurordis Therapeutic Development Director. EuroBioBank Administrative Coordinator. www.eurordis.org www.eurobiobank.org

Health & MedicineTechnology
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Fabrizia BIGNAMI, PhD Eurordis Therapeutic Development Director EuroBioBank Administrative Coordinator www.eurordis.org www.eurobiobank.org Biobanks: Patients’ Role and Expectations
Outline 1.  The EuroBioBank network:  when patients take the initiative   2.  Patients as actors in research 3.  Patients' expectations from BBMRI 4.  Patients' contribution to BBMRI
The EuroBioBank Network ACTIVITIES  Rare diseases are defined as affecting less than one citizen in 2,000.  30 million people in the 27 EU member states are affected. ,[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],[object Object],[object Object],[object Object],[object Object],History of the network
Key results ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Patients as actors: a specificity of the EuroBioBank Model ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Patients as actors: Other examples ,[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]
Patients as actors: expectations from the BBMRI ,[object Object],[object Object],[object Object]
Patients as actors: expectations from the BBMRI ,[object Object],[object Object],[object Object],[object Object],[object Object]
Patients as actors in BBMRI ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Patients as actors in the BBMRI The BBMRI Stakeholders’ Forum: a good starting point A more direct and official involvement of patients in specific BBMRI activities should be systematically seek identifying most appropriate patients’ representatives for each activity.
Thank you ! www.eurobiobank.org [email_address] [email_address] EURORDIS Plateforme Maladies Rares 102 rue Didot – Paris 75014 – France Tel + 33 1 56 53 52 10 Fax + 33 1 56 53 52 15

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Biobanks: Patients’ Role and Expectations

  • 1. Fabrizia BIGNAMI, PhD Eurordis Therapeutic Development Director EuroBioBank Administrative Coordinator www.eurordis.org www.eurobiobank.org Biobanks: Patients’ Role and Expectations
  • 2. Outline 1.  The EuroBioBank network:  when patients take the initiative   2.  Patients as actors in research 3.  Patients' expectations from BBMRI 4.  Patients' contribution to BBMRI
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  • 11. Patients as actors in the BBMRI The BBMRI Stakeholders’ Forum: a good starting point A more direct and official involvement of patients in specific BBMRI activities should be systematically seek identifying most appropriate patients’ representatives for each activity.
  • 12. Thank you ! www.eurobiobank.org [email_address] [email_address] EURORDIS Plateforme Maladies Rares 102 rue Didot – Paris 75014 – France Tel + 33 1 56 53 52 10 Fax + 33 1 56 53 52 15