CML Advocates Network

The global CML Advocates Adherence Survey was presented at the European Hematology Association (EHA) Congress 18 in Stockholm on 16/6/2013 in the oral session "08. CML - Clinical" (EHA Abstract S1104). Authors were Giora Sharf, Verena Hoffmann, Felice Bombaci, Mina Daban, Fabio Efficace, Joëlle Guilhot, Jana Pelouchová, Euzebiusz J. Dziwinski, Jan de Jong, Anthony Gavin, Jan Geissler. The presentation is available on as a webstream and as PPT download - and now also a PatientPower interview!

CML Horizons 2013, the 11th annual international conference for organizations representing people with CML was held from 3 to 5 May 2013 in Prague, Czech Republic. We were thrilled to have 141 participants from almost 60 countries attending this year´s conference. Video streams, presentations of all sessions as well as a photo gallery are now available! The web streams provide the opportunity for all those that could not join us in Prague to see the state of play in CML treatment and CML patient advocacy. Please share the links in your communities if you wish.

In case CML patient advocates consider to attend the international meetings of the European Hematology Association (EHA, 13-16 June 2013) and European Cancer Congress (28 Sept - 1 Oct 2013), we would like to update you on opportunities to attend these meetings and contribute to the programme. Please note the tight deadlines mentioned below if you want to attend or contribute!

The Survey on the Worldwide CML Advocates Network regarding Complementary and Alternative Medicine (CAM) which was conducted in collaboration with the CML Advocates Network was published in the March edition of the "Journal of Cancer Research and Clinical Oncology" (see Pubmed). 53 leaders of CML patients advocacy groups from 35 countries responded to the survey. Thank you all for your valuable contribution!

A  poster of the survey is now available for download, and click on "Read more" to read the abstract.

Optimal adherence to CML therapy is of key importance to maximise treatment effectiveness. Non-adherence as well as its biological effect on CML has been observed in clinical research, but data on potential driving factors of non-adherence are lacking in the scientific literature. A European workgroup of the CML Advocates Network, a network of leukemia patient groups in now 60 countries, has conducted a large international study enrolling patients from 9/2012 to 1/2013 in 12 languages. The aim of this study is to investigate motivations and behavioural patterns of adherence in CML and subsequently support hematologists and patients to improve adherence and develop suitable adherence tools. Overall 2546 questionnaires filled in by CML patients from 79 countries were returned. We are thrilled and thank all our members for their invaluable efforts to contribute to this survey by recruiting respondents!

This is the most comprehensive study conducted to date to gain knowledge about motivations behind non-adherence in CML. It has been accepted to be presented at the European Hematology Association's Annual Congress on 16 June as an oral presentation in the scientific programme. Click on "Read more" to read the abstract.

The "CML Advocates Network", an international platform for patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) now connects 76 organisations from 60 countries across all continents. This worldwide network offers support by sharing of best practice, information and advice for CML patient representatives. We are delighted to welcome our newest members

• Azerbaijan: Charter Of "Fighting Leukemia" Public Union
• Peru: ESPERANTRA
• Germany: Parents' Organisation for Children with CML (Elternverein für Kinder mit CML e.V.)
• Hong Kong: Adult Blood Cancer Group
• Sudan: Charity Organization for patients with CML

See the list of CML groups in the Network, and our worldwide map.