Today is World CML Day - 9/22!

WCMLD 2013 0922logo día mundial LMCLogo Today TogetherTODAY IS WORLD CML DAY!

One day, one community, one life changing reality… Today, we are together to make a status, share and involve on our needs!

Screenshot CML Today 1Screenshot CML Today 2Today on World CML Day, the CML Advocates Network is launching its brand-new mobile CML ADHERENCE APP “CML Today” for CML patients to support adherence to TKIs as well as to track their PCR results.

The mobile app is available for free in English, French, Spanish, German, Portuguese, Arabic, Hebrew, and more languages will follow soon.

Find „CML Today“ in the Apple App Store (iphone) and in the Google PlayStore (Android). Please talk about “CML Today” and encourage CML patients to use “CML Today”!

Please also check out the activities that are being carried out all over the world on World CML Day 2015 and the campaign materials developed by members of the CML Advocates Network.

More information on World CML Day 2015 can be found here.

The CML Advocates Network wishes everybody an inspiring and successful World CML Day 2015!

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CMLadvocates.net goes mobile, now optimized for smartphones

cmladvocates-mobile-screenshotOn World CML Day on 22 September, the CML Advocates' Network will launch a mobile app for CML patients to support adherence to TKIs as well as to track their lab results.

In order to make all our information available more conveniently wherever you are, the cmladvocates.net website is now also smartphone-ready. All information on cmladvocates.net, e.g. the news on the homepage, are now optimized for small screens when accessed from mobile phones.

 

 

Getting ready for World CML Day 2015 on Sept 22

WCMLD 2013 0922Logo Today Together... is the motto for this year´s World CML Day campaign! One day, one community, one life changing reality… Today, we are together to make a status, share and involve on our needs!

To help our members spread the message of awarenss and strenghten their voice, this year the CML Advocates Network is providing a World CML Day "Toolkit" that includes adaptable artwork for print and online use (posters & flyers), a photo-database, a press release and communication guidelines containing valuable strategies and hints for how to get the most out of the campaigns. Visit our World CML Day Section on this website to learn more about World CML Day, about this year´s campaign and about key initiatives planned and campaign materials prepared by our members for this Sept 22. Wishing you all an inspiring and successful World CML Day 2015!

wcmld15 key-audiences

 

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:

  • Living with CML: David´s story of courage and hope (English)

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

ELN2013summary-coverThe 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

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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!

EHA2015 congress-centerFrom 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.

Read more ...

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

logo cmladvocates newsletter

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

Frontpage Newsletter Hungary 2015 1

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!

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