CML Horizons 2012: 86 patient advocates from 48 countries met to "Learn, Share and Grow"

cml-horizons-2012-150pxThe "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.

CML Horizons 2012: Learn. Share. Grow. 11-13 May 2012, Munich, Germany

cml-horizons-2012-150pxThe 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!

Patient-friendly summary of ELN Guidelines now available in seven languages

While treatment guidelines and recommendations are recognised as being the standard of care by haematologists, they can be difficult for patients to understand. 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 seven languages: English, French, Spanish, German, Italian, Macedonian and Polish! 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. See the summary here.

Now 64 patient organisations from 51 countries are members of the CML Advocates Network

cmlan_150pxThe "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!

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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)

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ASH 2011: Summary of Education Session on CML

edu_room250Traditionally, 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: EnglishGerman - 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.

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(9/22) is International CML Awareness Day!

CML Awareness DayThank you!

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

See events planned for 9/22 world wide

Read the press release


 

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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.

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Patient advocates reporting from EHA Congress 2011 (Update)

ehaOn 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.

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New Horizons 2011: 137 patient representatives from 48 countries met in Amsterdam

nh2011-logo

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.

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Rising Sun 2011: CML Patient advocates from Asian countries convened in Singapore

Rising SunOn 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.

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