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  Patient advocacy groups  in rare cancers Jan Geissler Co-founder, CML Advocates Network Chair, LeukaNET Founder, Patvocates    http://www.cmladvocates.net
About the  CML Advocates Network ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Time is often of essence in the  rollercoaster patient journey ,[object Object],[object Object]
Patients with rare cancers  face specific challenges ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Rare diseases and rare cancers  – is there a difference? ,[object Object],[object Object],261 RARE CANCERS 6000-8000  Rare    Diseases Cancers
Different categories of rare cancer advocacy groups ,[object Object],[object Object],[object Object],[object Object],[object Object]
Patient advocacy groups  operate on three levels ,[object Object],[object Object],[object Object]
Role #1  Patient Information and Support
Having cancer,  access to information is crucial ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Patients and patient advocates need access on different levels ,[object Object],[object Object],[object Object]
Centralized, quality-assured info  portals: do they meet the needs? ,[object Object],[object Object],[object Object],[object Object]
Role #2  Influencing  the political agenda
Patients can induce change in healthcare, esp. in rare cancers ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Role #3  Patients' participation in (rare) cancer research
Patients – as co-researchers? ,[object Object]
Patients have a complementary expertise that is invaluable to research ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Where can patient groups  contribute to cancer research? ,[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],Reviewer Co-researcher Driving force ,[object Object],Research subject Informat. provider Advisor
[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Rare cancer patient organisations as true partners!
Thank you! ,[object Object],[object Object],[object Object],[object Object]
Internationally  operating Rare Cancer Advocacy Organisations ,[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]

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Rare Solid Cancers: An Introduction - Slide 5 - J. Geissler - Patient advocacy groups in rare cancers

  • 1. Patient advocacy groups in rare cancers Jan Geissler Co-founder, CML Advocates Network Chair, LeukaNET Founder, Patvocates http://www.cmladvocates.net
  • 2.
  • 3.
  • 4.
  • 5.
  • 6.
  • 7.
  • 8. Role #1 Patient Information and Support
  • 9.
  • 10.
  • 11.
  • 12. Role #2 Influencing the political agenda
  • 13.
  • 14. Role #3 Patients' participation in (rare) cancer research
  • 15.
  • 16.
  • 17.
  • 18.
  • 19.
  • 20.