Now also in Italian: Video "What you need to know about adherence to therapy"
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)!
EHA Patient Advocacy Session: Quality of Life - do patients perceive it the same way as doctors do?
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.
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Now also in Hebrew: Patient-friendly summary of ELN Guidelines now available in ten languages
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.
Now 66 patient organisations from 53 countries are members of the CML Advocates Network
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!
- See profile of Thai CML Patients Group
- See the list of CML groups in the Network, and our worldwide map
CML Horizons 2012: Meeting Report and Webstreams now available
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.
Welcome to our CML Education & Science Section!
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 patients, aimed 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.
We hope that you will find this section useful! If you have additional information or feedback, please make sure you contact us at info@cmladvocates.net!
