ASH Education Session: "An Embarrassment of Riches"
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Much has been done: Activity report of the CML Advocates Network & Leukemia Patient Advocates Foundation
The "Leukemia Patient Advocates Foundation" is a patient-led non-profit foundation in Switzerland. Its mission is to improve the lives and survival of patients affected by leukemia by supporting leaders of patient organisations in providing help and support. It hosts the global "CML Advocates Network" connecting more than 80 leukemia patient organizations in more than 60 countries, and hosts the "CML Horizons" annual global leadership for patient leaders from all world regions. The Foundation collaborates with all stakeholders involved in research, treatment and care of leukemia patients.
The Leukemia Patient Advocates Foundation has been registered in October 2011 as a non-profit organisation. This is the first report of the Foundation’s activities in the period of October 2011 to December 2013.
(in English -- in Deutsch/German)
CML Advocates Network presents their adherence survey at ASH 2013 - poster available for download
The CML Advocates Network has conducted a large international study with 2546 patients from 79 countries in 12 languages. It aimed to investigate motivations and behavioural patterns of adherence in CML, and subsequently support hematologists and patients to improve adherence and develop adherence tools. After first data had been presented at the scientific programme of EHA congress in June 2013, the CML Advocates Network is presenting new results of its multivariate analysis on factors predicting intentional non-adherence at the anuual congress of the American Society of Hematology (ASH) in New Orleans 2013! Click on "Read more" for the abstract, or here to download the poster.
EHA asks patients to report the unavailability of hematology medicines in Europe
The European Hematology Association (EHA) has developed a website survey where doctors, patients and healthcare professionals can report unavailability of medicines for haematological diseases. Over the course of the following months, EHA will collect and analyze these reports so that we can develop a coherent picture of the scope, causes and consequences of these problems in Europe. At the moment such an overview does not exist which makes it difficult for European politicians and policy makers to take measures that are effective have high impact.
As the success of our efforts fully depends on the quantity and quality of reports, EHA has asked for our help: If you are aware about unavailability of medicines in Europe, please go to EHA's survey at https://www.surveymonkey.com/s/GWH3DK5.
EHA will make all collected evidence publically available, so it is also of use for our community.
Save the date: CML Horizons 2014, 2-4 May 2014, Belgrade / Serbia
"New Horizons" and "CML Horizons" have been key events in the global CML advocacy calendar since New Horizons was first established in 2003. We are pleased to inform you that "CML Horizons 2014" will be held on 2-4 May 2014 in Belgrade, Serbia.
We very much hope that leaders of CML patient organisations from all across the world will be able to attend the 12th conference of its kind - with an exciting program on CML advocacy and CML science, and great networking opportunities with CML advocacy leaders around the globe!
Please save the date (2-4 May 2014) in your calendars!
Now 82 patient organisations from 64 countries are members of the CML Advocates Network
We are delighted to welcome two new members to "CML Advocates Network", which now connects 82 organisations from 64 countries across all continents. Our newest members are:
- South Korea: Leu Hiking Club
- Iraq: Leukemia Patient Care Association
See the list of CML groups in the Network, and our worldwide map.
