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.
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.
The "CML Advocates Network", an international platform for patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) now connects 66 organisations from 53 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 member "Thai CML Patients Group" from Thailand!
The "CML Horizons 2012" conference, held in Munich on 11-13 May 2012, has again demonstrated the power of patient advocacy - and that collaboration, sharing and networking across borders is key to help patients and families affected by CML. The meeting report (PDF) as well as video streams of all plenary sessions are now available.
Facilitating access to information and providing educational material and scientific information in a patient-friendly language to patient advocates is one of the main objectives of CML Advocates Network.
In this section you will find:
- Our research on adherence in CML: The CML Advocates Network has conducted extensive research on adherence in CML.
- Educational videos for patientsed to highlight the subjects of “adherence”, “side effects” and "testing and monitoring". These topics are considered relevant for nearly every CML patient. Videos are available in different languages.
- Animated patient videosAnimated patient videos that bring to life the emotional impact of CML on patients and their friends and family, in addition to their future hopes and aspirations. All stories are based on the international CML Book "Faces of Courage and Hope", an English-language book that illustrates the life of 16 CML patients from 15 countries.
- Patient-friendly summaries of the European LeukemiaNet (ELN Treatment Recommendations. Our patient summaries are available in different languages.
- CML learning programmes. At this stage you can access the EBMT CML Learning Programme devised by the European Group for Blood an Marrow Transplantation (EBMT) Nurses Group. It has been developed specifically for nurses dealing with CML patients. More programmes shall follow in the near future.
- A CML Glossary that will help you understand medical and scientific texts. It contains a list of terms commonly used in the area of CML.
The "CML Advocates Network", an international platform for patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) now connects 65 organisations from 52 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 member "CML Tunisia"!
The "CML Horizons 2012" conference, held in Munich on 11-13 May 2012, was a great success. 86 representatives of leukemia patient organisations from from 48 countries participated in this global advocacy summit. It helped CML patient advocates to identify opportunities in patient advocacy and patient support, hear about newest advances in CML management, share ideas and best practices, and start building alliances across borders. CML Horizons is an independent, community-run and multi-sponsored conference, run by the CML Advocates Network and the Leukemia Patient Advocates Foundation. It has evolved from the "New Horizons" conferences 2002-2011. See more information here.
The Chronic Myeloid Leukaemia Learning Programme, devised by the European Group for Blood and Marrow Transplantation (EBMT) Nurses Group, represents the first specialist Chronic Myeloid Leukaemia (CML) education programme that has been developed in Europe especially for nurses. The programme, which will be launched during the opening ceremony of the annual meeting of the European Group for Blood and Marrow Transplantation (EBMT), to be held in Geneva, Switzerland, 1-4 April, 2012, has been designed to help nurses and other allied health care professionals through the rapidly evolving CML treatment landscape and enable them to deliver optimal care to patients.
>> The programme (PPT slides) is available for download here <<<
The 9th "New Horizons In Treating Cancer Conference", held in Amsterdam in May 2011, was a great success. 137 patient representatives (97 CML, 40 GIST) from 48 countries participated in this meeting. New Horizons has been instrumental in educating patient advocates, building patient groups' capacity, implementing advocacy initiatives. "CML Horizons 2012", held 11-13 May 2012, is now a fully community-run and multi-sponsored conference, run by the CML Advocates Network. An exciting programme has been defined by a global steering committee consisting of CML patient advocates from North America, Latin America, Asia, Europe, Middle East and Africa. Registration has started now - please send us an email if you are a CML patient group that has not received an invitation!
Like every year in December, about 21.000 hematologists and health professionals (as well as a small group of patient advocates) convened at the Annual Meeting of the American Society of Hematology (ASH) to hear latest news from research in leukemias, lymphomas and other blood disorders.
We have attended the scientific CML sessions at ASH 2011 and are now summarizing the most important presentations and posters, complemented by a patients' perspective. This report covers key presentations on Nilotinib, Dasatinib, Bosutinib, Ponatinib, DCC-2036, Imatinib-Interferon combination, STOP studies, as well as some studies on CML and diabetes or fatigue.