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 |
Use of complementary medicines: Calling patient advocates to contribute to survey
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.
International CML Awareness Day on 22 Sept coming up: what are your plans?
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.
- Awareness Day Initiatives 2012
- "Faces of CML" photos
- Provide your own photo
- Sign the proclamation
- Awareness Day Events 2011
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Patient advocates reporting from EHA Congress 2011 (Update)
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.
New Horizons 2011: 137 patient representatives from 48 countries met in Amsterdam
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.
