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A review of 2014 in the CML Advocates Network...


CML Advocates Network-logo-rectangleA busy year is coming to its end, and it´s a good time to reflect on our achievements and activities of the past twelve months. To name just a few:
  • An exciting and enriching "CML Horizons" Conference in Belgrade in May 2014.
  • World CML Day on 22 September 2014 that demonstrated the unity of the global community with more than 30 worldwide activities.
  • Publication of the International CML Book "Faces of Courage and Hope", published just in time for World CML Day 2014.
  • Our inofficial Clinical Trial Registry that has significantly expanded over the past year. Currently the database lists 19 ongoing CML trials.
  • Our CML Generics Declaration that a group of CML patient advocates agreed on in May 2014, complemented by a "knowledge base" on CML generics.
  • Launch of a number of new educational videos for patients, aimed to highlight the subjects of "adherence", "side effects" and "testing and monitoring".
  • Publication of a patient-friendly summary of the European LeukemiaNet recommendations (2013) for the management of Chronic Myeloid Leukemia.
  • Publication of a summary of the patient advocacy sessions at the EHA congres in June 2014.
  • Publication of two first reports of the ASH meeting in December 2014.

 

CML Horizons 2014 and 2015

On 2-4 May 2014, 119 delegates from 58 countries supporting patients and families affected by Chronic Myeloid Leukemia (CML) met in Belgrade (Serbia) to learn from medical experts, share best practice in patient advocacy and grow their organization’s capacity. Again this year, enlightening medical sessions and discussions, inspiring posters and enriching best practice examples served mainly two purposes: to improve the life of patients and empower patient groups! Read more here…

CML Horizons 2015 will be held on 1-3 May 2015 in Barcelona, Spain. We are going to start registrations for patient advocates in early January 2015. All patient advocates that have attended previous CML/New Horizons meetings and are member of the CML Advocates Network will receive an email early next year - please watch your inbox for news from us!

World CML Day 2014

Again this year, on World CML Day 9/22 leukemia patients worldwide united to address the courage and hope required to live with CML, and called for access to best available treatment and care for all patients. It was a day full of excitement, but also of learning, reflection and hope.

35.000 magnetic World CML Day pins (as our global CML symbol) travelled across the world, to be with CML advocacy organizations and healthcare professionals on 22 Sept (9/22). 32 CML groups from all over the world reported their activities.
Read more here…

International CML Book "Faces of Courage and Hope"

1500 books illustrating the life of 16 CML patients from 15 countries were shipped to more than 50 countries on all continents! The book "Faces of Courage and Hope" introduces the faces and cancer journeys of sixteen patients with CML. Men and women of different ages, ethnicities and backgrounds, each share their unique experience in coping with life-altering circumstances and how they refocused their lives.

The book is still available for sale!
As a “Christmas Special”, we are now offering the books at a special rate! This offer is only valid for members of the CML Advocates Network (member organizations) and applies to all orders received before January 6, 2015.
Read more here…

Inofficial CML Clinical Trials Database  

Patients wishing to participate in clinical studies often look for a central source of information where they can find easy-to-understand facts on ongoing trials. CML Advocates Network is now hosting an inofficial database of current CML trials which have been initiated by academia (universities) or by pharmaceutical companies. This database is run by patients for patients and is set up as a dynamic register in which data are updated on an ongoing basis.
Read more here…

CML Generics Declaration and Generics Knowledge Base 

A topic of increasing attention is the introduction of generics in CML treatment. Following intensive discussions at the global CML Advocates Network's global meeting of representatives of CML patient advocates on 2-4 May, CML patient groups agreed on a declaration on measures to minimize potential uncertainties and risks for patients.
Read more here …

Educational Videos on "adherence", "side effects" and "testing and monitoring"  

Facilitating access to information and providing educational material to patients is key to patient advocacy groups. In 2012, a European workgroup of patient advocacy groups and CML experts started to develop and produce a series of educational videos on CML, supported by Bristol-Myers Squibb. Videos are by now available in 11 languages. Currently there are three videos available: one on managing side effects, one on therapy adherence, and one on testing & monitoring.
Read more...
 

Patient-friendly summary of the ELN guidelines (2013)  

The European LeukemiaNet (ELN), a research network of excellence funded by the European Union, provided updated treatment recommendations in 2013. The recommendations are based on a consensus of 32 CML experts from Europe, America and Asia-Pacific and on the best scientific data available at the time of publication. To help patients understand the ELN recommendations, in 2014 the CML Advocates Network has developed a document in lay language. The summary is now available in 15 languages.
Read more here...
 

EHA meeting 2014 in Milan / Italy 

The Meeting of the European Hematology Association (EHA) Congress 2014 has put patients at the center by offering a full-day Advocacy Track. It tackled sensitive issues like generics in haematology, young patients with old people’s diseases, as well as access to medicines and fair pricing. The sessions on 13 June 2014 was again supported by the  CML Advocates Network.
Read more...
 

ASH meeting 2014 in San Francisco / USA 

The Annual Meeting of the American Society of Hematology (ASH) is the biggest and most important global annual scientific hematology conference where most of the data on new trials, treatments and research is being published. This year´s ASH meeting – the 56th meeting of its kind – was held in San Francisco from 6-9 December 2014. As in previous years, Jan Geissler and Giora Sharf as representatives of the CML Advocates Network published a patient friendly summary of the most important topics and findings related to CML. We would of course welcome your translation into your language, as in previous years. Please let us know if you're planning to translate them.
See full ASH-report here.
 
Thanks to you all for your engagement and active contribution during 2014! We look forward to working with all of you in the coming year to deliver the best possible outcomes for CML patients across the world!
Finally, we wish you all MERRY CHRISTMAS and a happy, healthy and successful 2014. All those of you who are starting for a shorter or longer Christmas break, enjoy your vacation!

We are sure that another exciting year lies ahead of us!

Best regards,
Jan, Giora and Nicole
Your CML Advocates Team

 
   
 

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