Patient advocacy at the EHA 2015 congress in June 2015 in Vienna/Austria: presentations now available!
From 11-14 June 2015, the European Hematology Association's (EHA) Annual Congress opened its doors in Vienna, Austria. Again this year, the CML Advocates Network has been working closely with EHA to provide patient advocates with free congress registrations and exhibition booths. 48 patient advocates from 37 hematological patient organizations attended the congress. Patient advocates are recognized by EHA as competent and reliable partners.
Patient Advocacy sessions were again an integral part of EHA's annual congress program! PDFs of all three patient advocacy sessions are now available. Click on the respective presentation to download the slides.
New sub-section: Compilation of newspaper articles and reports on CML generics and copy drugs
We are pleased to announce the launch of a new sub-section on our website: The menue item "What´s in the news?", a sub-section of our "CML Generics" section, contains newspaper articles and reports related to generics and copy drugs in CML. This sub-section "lives" only if you make it grow! So please share all interesting and relevant articles that you come across with us! Please see the current list of articles here and share all articles related to CML generics and copy drugs that you come across!
Now available: Mina´s story in French language
In September 2014, the CML Advocates Network published the international CML Book "Faces of Courage and Hope" an English-language book that illustrates the life of 16 CML patients from 15 countries.
Mina´s story is now also available in French language. See here: "Living with CML: Mina´s story of courage and hope" (French)
Here are all other currently available videos:
- Living with CML: Bert´s story of courage and hope (English)
- Living with CML: Mina´s story of courage and hope (English)
More videos will follow!
Please help us promote the book! And remember: CML Advocates Network Member Organisations can order copies of the books at production price (8.50 EUR per book incl. VAT, excluding shipping costs)! Order your copies now!
All non-members can buy the book via Amazon.co.uk and Amazon.de - Amazon ships the book world-wide!
CML Advocates Network e-mail Newsletter of May 2015 published
The May 2015 Edition of our e-mail newsletter provides updates about the following recent projects and activities within the CML Advocates Network:
- Welcome to our new members - our network grows to 102 organizations in 78 countries!
- CML Horizons 2015: Presentations available, webstreams & conference report coming soon
- New CML Horizons Steering Committee 2016-2017 has been elected
- The CML Advocates Network´s Clinical Trial Registry now lists 28 CML studies
- First two animated patient videos available
- ELN Summary now in 17 languages
- Two must-reads: CancerWorld articles on "Side effects of target treatments" and "Generic cancer drugs"
Read our CML Advocates Network Newsletter, May 2015 edition, here.
Find our archive of earlier newsletters here.
Subscribe to our E-Mail newsletter here.
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 nicole@cmladvocates.net informing which stories would be of particular interest. We will then support by requesting approvals by the photographer and the patients.
More information on our International CML Book "Faces of Courage and Hope" can be found here. Please help us spread this wonderful book and its moving stories to CML patients worldwide!
CML Horizons 2015 presentations now available for download
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.
Welcome, Max´s Vie (Vietnam) and Max Miracle (Cambodia)! Now 102 patient organisations from 78 countries in the CML Advocates Network
We hereby proudly welcome two new members to our network: Max´s Vie based in Vietnam and Max Miracle from Cambodia. The CML Advocates Network now counts a total of 102 member organisations in 78 countries worldwide! See the list of CML groups in the Network on our world map.
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
CancerWorld article on Side Effects of target treatments: Our CML adherence study is mentioned
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.
If you are interested in a free registration, please reserve your free registration here.
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.
Welcome to our 100th member in the CML Advocates Network!
Since its initiation in 2007, the CML Advocates Network has grown at an amazing pace. Since January 2015, 10 new organizations from 7 countries have joined the network! Our newest members are the "Indonesian CML & GIST Community (ELGEKA Indonesia)" and “Leucémie Espoir” from Mali. WELCOME! With this, we have now reached a total of 100 members based in 76 countries worldwide! See the list of CML groups in the Network on our world map.
The CML Advocates Network's Clinical Trial Registry now lists 24 CML studies
The CML Clinical Trials Registry is growing steadily. Our database continues to benefit from additional studies which makes this resource increasingly valuable to patients. Seven new studies have been entered since November 2014. The registry now lists a total of 24 CML studies at http://www.cmladvocates.net/cmltrials and we are continually adding further studies as they become known to us. Thanks very much to everyone who provided information on new studies or helped ensure that the registry entries are correct and remain up to date.
The recently included studies are:
- a first-line trial with ponatinib for CML in accelerated phase;
- two trials after therapy failure or intolerance (early switch from imatinib to dasatinib (CA180-399), bosutinib after treatment with tyrosine kinase inhibitors (B1871039));
- a study comparing imatinib to nilotinib in CML in chronic phase;
- a study of decitabine plus dasatinib for CML in blast phase;
- a treatment discontinuation study (LAST); and
- eltrombopag for thrombocytopenia in CML.
For other studies that were previously included in the registry, we have updated the list of participating study centers and added study information or relevant links.
Recruitment has been completed in five studies, meaning that no further patients will be included. These studies have been moved to the new category “Trials that are no longer recruiting”.
The registry has also been improved by a new geographical feature. You can now find the region where the study is being performed in square brackets immediately behind the study title (for example, “Drug xy for CML in chronic phase [Europe, North America]).”
Do you know of any study that is not yet listed here? Please let us know by filling out this form.
Or is there an entry which should be corrected? If so, please send us an email.
Please also visit our discussion forum if you have any questions or wish to share your experience on these studies!
