Welcome to the CML Advocates Network!
We are a worldwide network of non-profit organisations supporting patients with Chronic Myeloid Leukemia (CML) and their relatives. We do this by sharing knowledge and best practice, supporting campaigns, and educating advocates how to build and grow patient groups. The network is solely run by volunteers who are CML patients themselves.
This is what you can do here: Find CML patient groups in our worldwide directory of CML patient groups. Find out more about the CML Advocates Network. See our directory of web links. If you are representing a CML patient group, please log in to access our Wiki, our discussion forum, our photo gallery or our download area -- or please register if you are not yet a member.
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!
Our survey on complementary medicine in CML recently published in the „Journal of Cancer Research and Clinical Oncology“
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.
Global CML Advocates Adherence Survey will be presented in scientific programme at EHA Congress in Stockholm
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
The following video interviews done by our partner Andrew Schorr of PatientPower have just been published and are available as webstreams:
- A CML Advocate's Perspective on News from ASH 2012: Interview with Greg Stephens, National CML Society
- The latest in CML: a Global Patient Advocate's Perspective with Jan Geissler, CML Advocates Network
- An Expert’s Perspective on Changing CML Treatment Options: Dr. Moshe Talpaz discusses whether or not the "big guns"of treatment should be used up front or saved as a later option
- Ponatinib Study Brings Positive Results For the Most Resistant Types of CML, Dr. Jorge Cortes
- Video on Adherence in CML now available in English and Italian, plus versions with subtitles in German, Spanish, Hebrew, Dutch and Chinese
- CML Horizons 2013: Registration has now started
- Now also in Chinese: Patient-friendly summary of ELN recommendations on CML management in 11 languages
- News on CML from the 2012 ASH Conference – our Patients' Perspective