Our patient-friendly summary of the 2009 version of the European LeukemiaNET Treatment Recommendations on CML
has been picked up very strongly by the community, demonstrating the demand of patients to understand the expert recommendations: Our web versions of the patient-friendly summary
were viewed 8.300 times in Spanish, 8.600 times in Italian, 14.500 times in French, 17.100 times in English since 2011 - not counting the PDF downloads from our website and printed versions that were disseminated at meetings. The summaries were not only used by patients, but also by physicians as a tool to explain treatment milestones and monitoring in a more understandable way. With great support from the community, our last summary was actually made available in 11 languages.
The new summary has been developed by a workgroup of patient advocates (Giora Sharf, Jan Geissler, Felice Bombaci, Mina Daban, Euzebiusz Jan Dzwinski, Tony Gavin, Jana Pelouchová, Jan de Jong), and then further reviewed by Dr. Rosti, Dr. Mahon, Dr. Saglio, Dr. Ossenkoppele and Dr. Raanani. In addition, translations have been reviewed by CML
experts on the national level.
The 2013 ELN treatment recommendations were published in the Blood journal in 2013 by 33 CML experts from Europe, North America, Asia and Australia, reflecting new important data e.g. on the new TKIs, on treatment milestones, on switching treatments, on stopping treatment and on pregnancy. Hence, our lay summary became outdated.
Please feel free to print the summary for your patients, and please make sure you share the news in your communities and groups, on your websites and Facebook pages, on your Twitter feed, at your events and so on! Information is the best medicine, so help your patients find this important resource. Please use the hashtag #WorldCMLDay in your tweets and Facebook posts!