Welcome, CFР «DROP BLOOD» (Ukraine)! Now 102 patient organisations from 78 countries in the CML Advocates Network
We hereby proudly welcome a new member to our network: CFР «DROP BLOOD», based in Ukraine. 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.
Now available: David´s story in form of animated video
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. The book features wonderful photos and moving interviews. Selected patient stories are now also available in form of animated videos! The animated stories bring to life the emotional impact of CML on patients and their friends and family, in addition to their future hopes and aspirations. David´s story is now also available:
Other currently available videos are:
- Living with CML: Bert´s story of courage and hope (English)
- Living with CML: Mina´s story of courage and hope (English / French)
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!
Patient-friendly summary of the ELN CML Treatment Recommendations now also in Azerbaijani language - and 16 other languages
The CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML.
It is now available in 17 languages: English, Arabic, Azerbaijani, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Serbian, Spanish and Turkish (new: Azerbaijani, a big thank you to Mehriban Bagirova from the Charter of Figthing of Leukemia Public Union Azerbaijan).
See our ELN Summary here: http://www.cmladvocates.net/cmlsummary
CML Advocates Network e-mail Newsletter of July 2015 published
The July 2015 edition of our e-mail newsletter provides updates about the following recent projects and activities within the CML Advocates Network:
- EHA 2015 congress in June 2015 in Vienna/Austria: patient advocacy a central topic in the scientific programme
- Call for volunteers: test phase for our CML adherence app starting soon. Technically-adept and less experienced users wanted!
- CML Horizons 2015: visit our photo gallery!
- "Junior CML Advocates" section on cmladvocates.net - new design, new content
- "What´s in the news?": share newspaper articles and reports related to generics and copy drugs!
- Two must-reads: CancerWorld articles on "Side effects of target treatments" and "Generic cancer drugs"
Read our CML Advocates Network Newsletter, July 2015 edition, here.
Find our archive of earlier newsletters here.
Subscribe to our E-Mail newsletter here.
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 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
