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.
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.
"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!
- South Korea: Leu Hiking Club
- Iraq: Leukemia Patient Care Association
The "CML Advocates Network", an international platform for patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) now connects 80 organisations from 63 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:
- Nepal: Blood Cancer Society Nepal
Over the next three years, CML patients in more and more countries will be facing the use of generic TKIs and copy drugs to treat CML. To provide patient organisations with background information on this important issue, we have launched a Resource & Knowledge Center on CML generics, copy drugs and substandard drugs. It provides
- the results of our survey on generics, copy drugs and substandard drugs in CML which was conducted by CML Advocates Network in collaboration with iCMLf in March 2013. The survey summarizes 86 responses from 55 countries - the data is also available for download!
- the webstreams of our session on CML generics and substandard drugs at "CML Horizons 2013", which featured a presentation of the WHO, of the CML Association of Serbia and the CML Advocates Network
- an index of scientific articles on the use of generic drugs in CML treatment
- our blog on CML generics. This is only available after login for members of the CML Advocates Network to keep discussions private
- a glossary that explains with key terms and definitions in the area of drugs and generics
We will complement this by a "Best Practice Toolbox" for advocacy on generics in a few weeks, which is currently under construction. The "toolbox" will provide useful advice and tools on how to address this topic as an advocacy organisation when generics or copy drugs are being introduced in your country.
We are looking forward to your active participation in the blog and the new knowledge center, and are happy to receive your feedback!
The detailed report of the conference can now be accessed here. You can also access the webstreams and photo gallery here.
Enjoy reading the report and feel free to share it in your communities!
Presentation at EHA: Non-adherence In Chronic Myeloid Leukemia: Results of a Global Survey of 2546 CML Patients in 79 Countries
The global CML Advocates Adherence Survey was presented at the European Hematology Association (EHA) Congress 18 in Stockholm on 16/6/2013 in the oral session "08. CML - Clinical" (EHA Abstract S1104). Authors were Giora Sharf, Verena Hoffmann, Felice Bombaci, Mina Daban, Fabio Efficace, Joëlle Guilhot, Jana Pelouchová, Euzebiusz J. Dziwinski, Jan de Jong, Anthony Gavin, Jan Geissler. The presentation is available on as a webstream and as PPT download - and now also a PatientPower interview!
CML Horizons 2013, the 11th annual international conference for organizations representing people with CML was held from 3 to 5 May 2013 in Prague, Czech Republic. We were thrilled to have 141 participants from almost 60 countries attending this year´s conference. Video streams, presentations of all sessions as well as a photo gallery are now available! The web streams provide the opportunity for all those that could not join us in Prague to see the state of play in CML treatment and CML patient advocacy. Please share the links in your communities if you wish.
In case CML patient advocates consider to attend the international meetings of the European Hematology Association (EHA, 13-16 June 2013) and European Cancer Congress (28 Sept - 1 Oct 2013), we would like to update you on opportunities to attend these meetings and contribute to the programme. Please note the tight deadlines mentioned below if you want to attend or contribute!
Our survey on complementary medicine in CML recently published in the „Journal of Cancer Research and Clinical Oncology“
The Survey on the Worldwide CML Advocates Network regarding Complementary and Alternative Medicine (CAM) which was conducted in collaboration with the CML Advocates Network was published in the March edition of the "Journal of Cancer Research and Clinical Oncology" (see Pubmed). 53 leaders of CML patients advocacy groups from 35 countries responded to the survey. Thank you all for your valuable contribution!
A poster of the survey is now available for download, and click on "Read more" to read the abstract.
Global CML Advocates Adherence Survey will be presented in scientific programme at EHA Congress in Stockholm
Optimal adherence to CML therapy is of key importance to maximise treatment effectiveness. Non-adherence as well as its biological effect on CML has been observed in clinical research, but data on potential driving factors of non-adherence are lacking in the scientific literature. A European workgroup of the CML Advocates Network, a network of leukemia patient groups in now 60 countries, has conducted a large international study enrolling patients from 9/2012 to 1/2013 in 12 languages. The aim of this study is to investigate motivations and behavioural patterns of adherence in CML and subsequently support hematologists and patients to improve adherence and develop suitable adherence tools. Overall 2546 questionnaires filled in by CML patients from 79 countries were returned. We are thrilled and thank all our members for their invaluable efforts to contribute to this survey by recruiting respondents!
This is the most comprehensive study conducted to date to gain knowledge about motivations behind non-adherence in CML. It has been accepted to be presented at the European Hematology Association's Annual Congress on 16 June as an oral presentation in the scientific programme. Click on "Read more" to read the abstract.