Now 64 patient organisations from 51 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 64 organisations from 51 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 "Association of patients with hemoblastoses" from Kazakhstan!
ASH 2011: Key news on CML from a patients' perspective
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.
(Translations: English - Russian - Hebrew - German - French - Macedonian)
ELN Recommendations - Patient-friendly summary (2009 version, outdated)
This is outdated!Please note this is the patient-friendly summary of the 2009 version of the ELN CML Treatment Recommendation. This version is outdated and has been replaced by our summary of the European LeukemiaNET's CML Treatment Recommendations of 2013. You find the most up to date summary here: http://www.cmladvocates.net/cmlsummary We are keeping these recommendations just as a reference, but please use the newer summary instrad. |
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. 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.
While treatment guidelines and recommendations are recognised as being the standard of care by haematologists, they can be difficult for patients to understand. Thanks to a great community effort, the summary is now available in nine languages: English, French, Spanish, German, Italian, Macedonian, Polish, Serbian and Hungarian! Select the language of your choice!
ASH 2011: Summary of Education Session on CML
Traditionally, the first day of the ASH Congress features Education Sessions. These sessions provide hematologists with the overall picture on a specific disease, including its biology, standard of care, current therapeutic challenges, results from recent trials and future outlook. This year, Prof Neil Shah (USA), Andreas Hochhaus (Germany) and Junia Melo (Australia) presented the state of play in CML treatment and care. This is our patient summary of the session.
(Translations: English - German - Russian - French)
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Quality of life in CML patients: Calling patient advocates to contribute to survey
The EORTC (European Organization for Research and Treatment of Cancer) "Quality of Life"Group, in collaboration with the GIMEMA (Italian Group Adult Hematologic Diseases), is coordinating a large international initiative whose main purpose is to develop an internationally validated questionnaire to assess the quality of life (QoL) of patients with chronic myeloid leukemia (CML). CML patients are being recruited in various hospitals in different countries to participate to this project, however, your contribution can further strength the quality of this project. The international scientific community believes that this research is very important because currently there is no "instrument" that allows doctors to know what are the most relevant health concerns for patients with CML. The research group is calling patient advocates to contribute to the survey.
(9/22) is International CML Awareness Day!
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More than 2200 signatures, 153 photos of "Faces of CML" received! We celebrate International CML Awareness Day on 9/22, the 22 September!!9/22 represents the genetic change of Chromosomes 9 and 22 that causes Chronic Myeloid Leukemia (CML). This September 22 (9/22), patient organisations across the world unite to raise awareness of the needs of patients living with CML. More than 1800 individuals from 53 countries have signed the proclamation, and almost 130 photos were submitted as "Faces of CML". Please have a look at the photos, which include the longest survivor with CML (34 years), two babies born by parents with CML, a CML patient with birthdate 9/22, a group that was celebrating 9/22 with a cake carrying the International CML Awareness Day logo, a marathon ironman with CML, and many more -- very impressive! Many things are happening today: Patient groups around the world are organizing impressive activities in their countries today, ranging from releasing awareness videos, holding press conferences, fundraising and awareness events and meetings with key experts and politicians. About 400 haematologists meet in Portugal to review the newest curative approaches at the conference "CML - Biology and Therapy" - starting on 9/22! See "Faces of CML Sign the proclamation |
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International CML Awareness Day - September 22... von LMC France |
