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!

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.

Group photo CMLHZ15-800

 

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

2015-03-31 13 29 08-Home - Cancer World - Shaping the future of cancer careGenerics 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

2015-03-31 13 10 04-Home - Cancer World - Shaping the future of cancer careThe 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!

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:

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!

Now 98 patient organisations from 74 countries in the CML Advocates Network!

We are truly overwhelmed by the rapid growth of our network. Since January 2015, we have welcomed 8 new organizations from 5 countries! It´s so great to see the community growing at this pace! Today we want to welcome The National Cancer Control Foundation based in Yemen as our 98th member organisation. We now have members in 74 countries worldwide! See the list of CML groups in the Network on our world map.

Patient-friendly summary of the ELN CML Treatment Recommendations now also in Serbian - and 15 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 16 languages: English, Arabic, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Serbian, Spanish and Turkish (new: Serbian, thanks to Jelena from the CML Association of Serbia).

See our ELN Summary here: http://www.cmladvocates.net/cmlsummary

 

4 new members: now 96 patient organisations from of 72 countries in the CML Advocates Network

CML Advocates Network-logo-rectangleThe CML Advocates Network is growing fast. We hereby proudly welcome four new members to our network. These are: APSBES / DILIGENCE GROUP from Togo, LUZ DE ESPERANZA from Peru, BCSG from Bangladesh and Zero Club from South Korea. With this we have now reached the number of 96 organisations from 72 countries across all continents. How exciting! See the list of CML groups in the Network on our world map.

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