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.
We are looking forward to our 2nd CML Horizons conference held at the Hilton Prague Old Town, Prague, on 3-5 May 2013. The CML Steering Committee has worked hard to ensure that the conference includes topics of importance to the CML patient community and provides a unique opportunity for participants to share experiences and best practice. The conference will again feature a good mix of medical sessions with world-renowned CML experts like Tim Hughes from Australia, Gianantonio Rosti from Italy, Dina Ben Yehuda from Israel, Katerina Machova from the Czech Republic and Fabio Efficace from Italy, as well as sessions with advocacy topics e.g. on substandard drugs and generics, e-advocacy and social media, advocating to policy makers or how to run patient meetings.
Leaders of leukemia patient advocacy organisations are eligible to participate in this conference. More information can be found at http://www.cmladvocates.net/cmlhorizons2013
Now also in Chinese: Patient-friendly summary of ELN recommendations on CML management in 11 languages
While treatment guidelines are recognised as being the standard of care by haematologists, they can be difficult to understand by patients. To improve the information available to patients, an international CML workgroup of patient organisations and experts have developed a patient-friendly summary of the European LeukemiaNet's recommendations for CML management. Thanks to a great community effort, the summary is now available in Chinese (new!), English, French, Spanish, German, Italian, Macedonian, Polish, Serbian, Hungarian and Hebrew! The summary aims to help patients to better understand CML management and communicate with their doctors regarding treatment and diagnostics. The original recommendations for physicians were published by CML experts on behalf of the European LeukemiaNet (ELN) in the Journal of Clinical Oncology in 2009. Find the summaries in all languages at http://cmladvocates.net/cmlsummary.
Thanks to Shanghai Roots & Shoots, CML Home of Hope for providing the Chinese translation!
At the 54th annual conference of the American Society for Hematology (ASH 2012), 159 results from clinical studies on CML were presented: 36 were presented orally, and 123 were featured on posters. We have personally chosen a selection of these in order to summarize the most important news e.g. updated data and new drugs in CML therapy, a new milestone to achieve <10% BCR-ABL at 3 months, "deep molecular remission" as a pre-requisite for a possible cessation of therapy, and Interferon combination studies.
(English, German and Hebrew versions by Giora & Jan, Russian translation by Sodeystvie, Chinese translation by Shanghai Roots & Shoots, Serbian translation by CML Serbia, Arabic translation donated by Nicola Srouji - thank you!)
Results of our pilot survey on adherence just published in "Journal of Patient Compliance" (Vol 2 Issue 4)
The "Journal of Patient Compliance" (Vol 2 Issue 4) has just published our scientific article on the patient-driven pilot survey on adherence in CML:
Optimal adherence to oral cancer therapy is of key importance to maximise treatment effectiveness in patients. With the advance of molecular target therapies, cancer treatment in more and more indications is transforming from in-hospital care towards oral treatment in an outpatient setting. With cancer becoming a chronic disease, patients are often required to take the drug indefinitely on a daily basis. Ensuring an optimal adherence to treatment over the long-term period could be a challenge. As data on the driving factors of nonadherence in oncology is scarce, a pan-European workgroup of the CML Advocates Network has conducted a pilot study which has unveiled differences of non-adherence between countries, administration types and use of adherence tools in Chronic Myeloid Leukemia. This pilot study has provided the groundwork for a larger global adherence study that is currently ongoing in 12 languages.
The "CML Advocates Network", an international platform for patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) now connects 68 organisations from 55 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 "CML SA" (South Africa), ZAGRLJAJ (Bosnia and Herzegovina) and "The Association for Blood Cancer Patients Aid" (Poland). See the list of CML groups in the Network, and our worldwide map.
Leukemia Patient Advocates Foundation launches CML Adherence Study in 12 countries on 22/09/2012 – and needs your help!
The Leukemia Patient Advocates Foundation, the legal host of the CML Advocates Network, is proud to announce the launch of phase 2 of its International CML Adherence Survey. The survey will launch in 12 countries on International CML Awareness Day (22 Sept 2012). As it is organized by the non-profit patient community, this research work urgently needs your support now: If you are a CML patient treated with TKI, please participate. If you are a doctor treating CML patients: Please encourage your patients to participate!
- International CML Awareness Day on 22 Sept coming up: what are your plans?
- Adherence: If you could see it through my eyes... (CancerWorld)
- Now also in Italian: Video "What you need to know about adherence to therapy"
- EHA Patient Advocacy Session: Quality of Life - do patients perceive it the same way as doctors do?