Welcome to the CML Advocates Network!
We are a worldwide network of non-profit organisations supporting patients with Chronic Myelogeneous Leukemia (CML) and their relatives. We do this by sharing knowledge and best practice, running joint campaigns, and educating advocates how to build and grow patient organisations. The network is run by volunteers who are CML patients.
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
Taking medication exactly as prescribed is not always easy for many patients with chronic myeloid leukaemia. However, adherence, or taking the medication as prescribed by the doctor, is important, as it has a strong impact on the effectiveness of treatment. "Chronic Myeloid Leukemia: What you need to know about adherence to therapy" is a video that educates patients with CML about the importance of adherence to treatment. The video was developed by a European workgroup of 8 patient advocacy groups and CML experts, supported with in-kind resources from Bristol-Myers Squibb.
It is now available in English and Italian, and now also in versions with German, Hebrew, Dutch, Spanish and Chinese subtitles.
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)
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!
Oncologists have been shocked by the growing body of evidence showing that many cancer patients are failing to take their drugs as prescribed, even when there is strong evidence to show they will benefit, and the side-effects are not considered serious. In a recent article of the magazine "CancerWorld", Giora Sharf, Estelle Lecointe and Stella Kyriakides try to explain why this may be happening. They urge oncologists to be more aware of their patients’ doubts and concerns about their medication, and to help them feel more comfortable about discussing their problems with adherence. Read the full article here.
Taking medication exactly as prescribed is not always easy for many patients with chronic myeloid leukaemia, also known as CML. But, it's important. Adherence, or taking the medication as prescribed by the doctor, has a strong impact on the effectiveness of treatment. "Chronic Myeloid Leukemia: What you need to know about adherence to therapy" is a new video that educates patients with CML about the importance of adherence to treatment. Now also available in Italian language (and English)!
Patients, physicians and researchers all have a unique perspective on quality of life. However, does a patient perceive it the same way as their physician? With Quality of Life becoming more and more important when hematological diseases are turning into chronic diseases, this year’s “Patient Advocacy Session” at the European Hematology Association’s Annual Congress 2012 provided key insights into the patients and professionals’ perspectives on this important issue. The session, defined by the EHA Patient Working Group and chaired by Jan Geissler of the CML Advocates Network and Androulla Eleftheriou of the Thalassaemia International Federation, has become an integral part of EHA’s congress.