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CML and GIST patient groups met in Germany (2007)

new_horizons_2007.jpgThe 5th International “New Horizons” Conference for Organizations Representing People with CML and GIST, held in Bad Nauheim, Germany, (29 June – 1 July 2007) brought together 80 representatives from 22 patient advocacy groups in 28 countries. This yearly event has become a platform for CML and GIST advocates from all over the world to meet and learn from the experience of each other. Advocacy issues that were discussed at the meeting included: CML and GIST medical updates, strategic alliances, challenges of running a newly established patients groups, how patients can contribute to the design and implementation of clinical trials, drug access, fund raising, and many more.

The three day packed programme included international medical authorities, with CML expert speakers including Jorge Cortes from MD Anderson Cancer Center, USA, Andreas Hochhaus from Germany, and Eduardo Olavarria, from the Hammersmith Hospital, London, UK. GIST experts included Jean-Yves Blay from France, Peter Hohenberger from Germany and Peter Reichardt from Germany. One practical session by Claudia Haferlach (Munich Leukemia Laboratory) explained how to read a lab result.

Other highlights included the launch of a new web platform “CML Advocates Network” as well as the “Bad Nauheim Declaration” as a tool to promote access to state-of-the art GIST treatment and care. Additional issues covered included complementary and alternative therapies, the challenges of running newly established patient groups, access to unapproved drugs, fund raising and interactions between patient groups and pharmaceutical companies.

The detailed report about the meeting as well as copies of the presentations are available to registered members of the CML Advocates Network. To read the full report, become a member of the CML Advocates Network!

 
   
 

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