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.
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!
9/22 represents the genetic change of Chromosomes 9 and 22 that causes Chronic Myeloid Leukemia (CML). On September 22 (9/22), patient organisations across the world will unite to raise awareness of the needs of patients living with CML.
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.
While treatment guidelines and recommendations 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 recommendations for CML management. Thanks to a great community effort, the summary is now available in ten languages: 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 here.