Update on CML Advocates Network and Leukemia Patient Advocates Foundation Giora Sharf, CML Advocates Network

New Horizons 2011: “The only constant is change” (Heraklitus)

Transition of New Horizons is now completed -- commitment continues… Thanks, Novartis!

CML Advocates Network grew to 64 organisations http://www.cmladvocates.net Global network of leukemia patient groups, founded 2007 Main objectives Provide public directory of CML groups Facilitate communication between CML advocates Build advocacy knowledge and capacities

CML Advocates Network: global collaboration 64 patient organisations 51 countries, all continents ~1/3 "all leukemias", not only CML

Achievements Jointly campaigned with CML organisations e.g. in Poland, Bulgaria, Macedonia, Kosovo, Kazakhstan Successfully lobbied for continuation of CML clinical trials Speakers at EHA, ISH, ELN etc Establishment of Patient Advocacy Session in EHA congress ASH reports in English, German, Hebrew, Malaysian, Russian, Spanish… Received the ESO "Cancer on Internet Award“ 2010 Helped establish "International CML Awareness Day 2011"

International CML Awareness Day 2011 2286 signatures, 153 photos with “Faces of CML”, 18 countries: Canada, France, USA, Macedonia, Israel, Colombia, Germany, Morocco, Russia, Venezuela, Serbia, …

Current international projects within the Network (I) Running cmladvocates.net CML Horizons Conference 2012 International CML Awareness Day Pediatric CML / Junior CML Advocates Patient-friendly summary of ELN CML Recommendations in 9 languages

Current international projects within the Network (II) Patient Advocacy Session in EHA’s scientific programme Survey on Complementary Medicines (27 countries) Adherence Survey (pilot survey 2011 in 8 countries, full survey in 2012 with 3000 patients in 11 countries)

What’s next? Regional & Global meetings? International CML Awareness Day – all united, all unique… Contribute on cmladvocates.net & Facebook! Discuss it at CML Horizons - it’s up to you!