CML Advocates Network Newsletter: July 2015

 
 
   
 

Dear friend of the CML Advocates Network,

It´s again time for a new edition of our newsletter in which we want to share the latest news and developments of our 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!

EHA 2015 congress in June 2015 in Vienna/Austria: patient advocacy a central topic in the scientific programme

EHA2015 2From 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 free congress registrations and a free exhibition booth. 48 patient advocates from 37 haematological 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! Two sessions were organized by patient organizations under the leadership of the CML Advocates Network and the Thalassaemia International Federation:
  1. Collaborating with patients for successful hematology research and for assessment of optimal benefits and risks.
  2. Partnership and evidence: key elements to improving access to treatment.

The presentations are made available for download here.

Furthermore, on Saturday afternoon there was a capacity building meeting that resulted in tangible follow-up actions on both aforementioned sessions. The presentation is also available for download here.

A big thanks to all CML advocates who attended EHA 2015! We greatly value your contribution and collaboration and hope to see you all again at EHA 2016!

Call for volunteers: test phase for our CML adherence app starting soon. Do you want to help us testing our mobile app?

CMLToday icon 3We are looking for 10 volunteers who are willing to help us testing our new mobile app on adherence "CML Today". The app will become available on Apple iOS and Android. Volunteers can be both technically-adept and less experienced users. To help us testing the app, you only need to have an Android smartphone or Apple iPhone and be accustomed to using mobile applications on a regular basis. If you are interested to help us, please contact Nicole at .

Background information: As in other chronic diseases, non-adherence to treatment is a well-known problem also in CML, where most patients need to take their medication on daily basis. In 2012-2013 the CML Advocates Network conducted a scientifically sound international study that aimed at investigating motivations and behavioral patterns of adherence in CML and subsequently supporting hematologists and patients to improve adherence by developing suitable adherence tools. "CML Today" will be made available for use on iOS and Android devices as of fall 2015 and will serve patients to

  • track the regular intake of their medicine
  • remind them to take their prescribed medication
  • track their PCR test results and other laboratory parameters
  • facilitate patients connect with local support groups in their country

The app is not limited to a specific therapy and can thus be used by any CML patient treated in accordance with current therapeutic standards. We trust that with this app, we are contributing to the improvement of adherence in CML.

CML Horizons 2015: visit our photo gallery!

Group photo CMLHZ15-800From 1-3 May 2015, the CML Advocates Network welcomed 118 delegates (among them almost 30 newcomers) supporting patients and families affected by Chronic Myeloid Leukemia (CML) to its annual conference in Barcelona (Spain). Don´t miss our photo gallery from this awesome event!

All presentation slides are also available on the website. The web streams of all sessions will also be made available shortly.

"Junior CML Advocates" section on cmladvocates.net: new design, new content

Junior-CML-AdvocatesOver the past weeks, a passionate team within the CML Advocates Network has worked hard on updating and re-structuring the "Junior CML Advocates" section on the network´s website. The new section can be found here: http://www.cmladvocates.net/junior-cml

The section is now structured as follows:

In order to keep this section up to date and being able to feed it with new useful information, we will need your support and active participation! Please share the above link within your groups and encourage affected children or their parents to share their testimonials. Please also send us news on pediatric CML and scientific publications that you come across and inform about your initiatives and activities your organization has carried out.

We want to deeply thank Cornelia Borowczak for taking the initiative in giving the Junior CML Advocates section a new face. A special thanks also goes to Rod Padua who is supplying us with new information on pediatric CML on a regular basis. For ideas and suggestions please contact Nicole at

"What´s in the news?": share newspaper articles and reports related to generics and copy drugs!

We have recently included a new subsection in the "CML Generics" section on cmladvocates.net called "What´s in the news?". In this subsection you will find a compilation of newspaper articles and reports related to generics and copy drugs. Our aim is to provide a database of relevant and sound articles for use by the community and others interested in the topic. Therefore, please share all articles you consider could be of interest by sending the respective link to Nicole at . Thank you for your contribution!


Best regards,
Jan Geissler, Giora Sharf and Nicole Schröter
Your CML Advocates Team
 

 

 
   
 

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