Now available: our resource & knowledge center on generics, copy drugs and substandard drugs
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
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an inofficial directory listing all CML tyrosine kinase inhibitors (TKIs) that are - to our knowledge - available to date.
- 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!
CML Horizons 2013: Report available now!
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.
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!
The report is available in: English, German, Hebrew
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: Video streams & Presentations available now!
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.
Patient Advocacy at European meetings "18th EHA Congress" and "ECC 2013"
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.
