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.
This is outdated!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 This version is outdated and has been replaced by our summary of the European LeukemiaNET's CML Treatment Recommendations of 2013.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!
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.
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.
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!
International CML Awareness Day - September 22... von LMC France
Many patients with cancer are using natural medicine as complementary and alternative therapies, or at least give serious thought to using them. 'Complementary therapies' must be understood as supplemental to conventional medicine, 'alternative therapies' as replacing conventional medicine. The CML Advocates Network, the University Center for Tumor Diseases (UCT) of the J. W. Goethe-University Frankfurt, Sarcoma Patients Euronet and Myeloma Euronet are asking patient advocacy leaders for their precious insight, knowledge and experience on complementary therapies.
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 will unite to raise awareness of the needs of patients living with CML.
On 9-12 June 2011, the European Hematology Association (EHA) held its 16th Annual Congress in London, featuring newest results from clinical trials and biology research in hematology. Several patient advocates attended the meeting. This year brought great news to the CML patient community - not only from a medical perspective. Jana Pelouchová and Jan Geissler chaired a very successful "Patient Advocates Session" on Adherence within scientific program of the congress, which featured Giora Sharf's presentation of brand-new data of the CML Advocates Network's pilot survey on adherence. In addition, patient advocates from 8 pan-European hematology patient organisations, including the CML Advocates Network, had a very fruitful meeting with EHA's executive board, potentially laying the base for a fruitful cooperation in upcoming years.
On 13-15 May 2011, "New Horizons in treating cancer" was held in Amsterdam. Sponsored by Novartis, the conference provided patient advocate leaders with an opportunity for 3 days of learning, companionship and the chance to share experiences across borders.The conference welcomed 137 patient representatives (96 CML; 41 GIST) from 48 countries in Europe, North America, Asia, Australia, Africa, Middle East and Latin America.
On 18-20 March 2011, patient representatives from 16 countries met in Singapore for the conference "Rising Sun 2011", the second annual meeting for CML advocates from the Asia-Pacific region. This event was truly a "dream come true" for Asian CML advocates, giving them an opportunity to meet peers, develop tight connections and learn from each other. With this year's representatives from China, Hong Kong, Korea, India, Indonesia, Malaysia, Philippines, Singapore, Taiwan, Thailand and Vietnam, Rising Sun had become a key meeting for CML patient groups. Speakers from these countries were joined by speakers from Australia, New Zealand, Germany, Switzerland and the USA.
The "CML Advocates Network", the international platform of patient groups supporting patients and relatives suffering from Chronic Myeloid Leukaemia, and the International CML Foundation join forces to support young patients affected by that rare form of leukaemia, as well as physicians and researchers. The project, launched on International Childhood Cancer Day on 15 February 2011, will encompass a range of activities to support collaboration and sharing of experience of parents of young patients as well as physicians treating children with this ultra-rare condition.
World Cancer Day 2011, Maximized: The Max Foundation submits 13.000 signatures to World Cancer Declaration
A delegation representing the Max Foundation's Maximize Life Movement arrived in Geneva on World Cancer Day (4 Feb 2011) and delivered 13,000 signatures endorsing the World Cancer Declaration to the Union for International Cancer Control (UICC). On behalf of 30 patient associations as well as volunteers and committed individuals in 87 countries, the five delegates brought with them the spirit and energy of everyone who embraces the Maximize Life Movement. Read more here