Hungarian CML organisation features patient stories of our book "Faces of Courage and Hope" in their Newsletter
The Hungarian patient organization “CML-GIST Betegek Egyesülete", who is a member of the CML Advocates Network, has published two patient stories of our book "Faces of Courage and Hope" in their recent newsletter. The stories were translated into Hungarian language and were slightly shortened. See page 8-9 of the newsletter.
If you are interested in incorporating selected stories from our book in your newsletters to both share the stories and promote our book, please send a short e-mail to informing which stories would be of particular interest. We will then support by requesting approvals by the photographer and the patients.
PDFs of all presentations of the CML Horizons 2015 conference (1-3 May 2015) are now available for download on the CML Advocates Network website. View them here: http://www.cmladvocates.net/cmlhorizons/cml-horizons-2015
Video streams of all presentations will become available in the next 2 weeks.
CancerWorld article on "Generic cancer drugs that we can trust", covering also the situation in CML with Imatinib going off-patent
Generics markets are gearing up for the expiry of patents on some of the first targeted cancer drugs. It's good news for greater access, but patients want reassurance that switching to generics won't put them at risk. A new CancerWorld article sheds more light on this issue which is increasingly relevant in CML in so many countries, given Imatinib will be off-patent everywhere latest by 2016. The CML Advocates Network has pioneered transparency on Imatinib generics (see http://www.cmladvocates.net/generics) and this is covered in this CancerWorld article, quoting CML Advocates Network members in Lithuania and Serbia... See the full article here
The side effects of targeted drugs are poorly documented, and their impact on patients frequently seriously underestimated and undertreated. A new CancerWorld article covers this important issue. Our CML adherence study and the issue of side effects in CML treatment is covered in detail! Also covered: the Myeloma Patients Europe survey and the GIMEMA CML study on the different perceptions of doctors and patients on side effects. A must read!
Free EHA congress registrations for representatives of patient organizations: Deadline 24 March 2015!
This year's EHA Congress will be held 12-15 June 2015 in Vienna, Austria. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is again offering a “Patient Advocacy Track” within the scientific program. A team of leading patient advocates is currently working on the sessions for the EHA Patient Advocacy track and making a great effort to cover topics of priority for patients across diseases that are – at the same time - attractive to hematologists.
As in previous years, EHA is again providing 50 free congress registrations for leaders of hematology patient organizations to give patient advocates the opportunity to attend the EHA congress in Vienna. The free registrations are only available to representatives of patient organizations, and EHA is requiring them to attend our capacity building session (planned for Saturday afternoon). The registration allows access to the scientific congress, but will not cover travel or accommodation costs.
Deadline for free registrations is 24 March 2015! Please also note that the free registration are subject to confirmation by the EHA office - the CML Advocates Network just collects statements of interest on behalf of the patient community.