DONOSIMO BILTEN - NEWSLETTER CML AN CAB (COMMUNITY ADVISORY BOARD)

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Dražen Vincek

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Dear members & friends of CML Advocates Network, 

As announced in our last CML-CAB newsletter, on 11 June 2023 we held our 2nd Academic CML-CAB meeting. The Executive Summary is now publicly available on the website for you to read!

2nd Academic CML-CAB held in Frankfurt on 11 June 2023 – Executive Summary now available!
This meeting was a continuation of the 1st Academic CML-CAB meeting held virtually in October 2020 under the motto “Mechanisms to cure CML – beyond TFR” (TFR = treatment free remission).
The main objectives of the 2020 meeting were to build a dialogue with academic researchers, reach consensus on what the key issues are in CML (status quo), establish a vision of where we want to be and how a cure could look like (beyond TFR), consider different approaches to cure and learn which of these are most promising to cure CML, and – last but not least – identify what we as a community can contribute to achieve the vision of a cure for CML, and define a “roadmap to cure”. A series of enablers and barriers were identified during said meeting. 

Parts of the barriers were again picked up and further discussed during the follow-on session, the 2nd Academic CML-CAB, which was held as a hybrid panel meeting and entitled: A cure for CML beyond TFR: is it possible? The aims of this latest Academic CML-CAB were to develop a mutual understanding, to learn from scientists who are involved in CML research and innovation, to see what is possible in terms of a cure for CML, and to try to get an answer to the following key questions:
  • What is the researchers’ approach and contribution towards CML cure beyond TFR?
  • Do they understand the needs and expectations of patients?
  • What are the barriers to move research forward?
  • How can the patient community and researchers support each other and collaborate?
Historically, there has been more focus on eradicating the disease than there is today. Currently there seems to be a trend to focus on prevention of resistance and improving TFR rates. The pharmaceutical industry has little or even no interest in research into the eradication of the disease whereas the research community and the clinical community have. Thus, the need to come together and see how both communities can best work together.

To this 2nd Academic CML-CAB we were able to bring together 9 researchers working in novel areas of CML, 2 research funding representatives, 15 CML-CAB members and CML-CAB Management team representatives – besides the minute writer – to jointly explore the barriers and opportunities of research towards new pathways to cure CML. 

The meeting turned out to allow for a fruitful dialogue between the patient community and the academic research community. Researchers felt that openly discussing different perspectives helped them better understand patients’ expectations and needs. It was agreed that there was a desire to work together on a path towards cure in CML and to continue collaboration with another Academic CML-CAB in the future.

YOU CAN ACCESS THE DETAILED NON-CONFIDENTIAL EXECUTIVE SUMMARY OF THE MEETING HERE!

CML-CAB and the Advocates Network are grateful to the European Joint Programme on Rare Diseases (EJP RD) for their financial contribution to support this meeting.
Introduction to CML-CAB

The CML Community Advisory Board (CML-CAB) is a working group of the CML Advocates Network. It is a key strategic tool to have a dialogue of experienced advocates and decision makers about the advocacy community´s priorities and concerns. 

CML-CAB is a global panel of 19 leading patient advocates from all world regions (“CML-CAB members”) who all represent the unique perspective of a CML patient or relative.

CML-CAB members work together to address issues of strategic importance to the community at large and advocate for the best possible research and equal access to the most innovative treatment & care for CML patients around the world.

CML-CAB monitors pharmaceutical developments and research in CML through active and targeted interaction, long-term cooperation and continued dialogue with pharmaceutical partners, regulators, medical experts, and the scientific CML community.

To learn more about CML Community Advisory Boards, visit the CML-CAB section on our website and watch our CML-CAB video.
 
Your donation can help our members in Latin America, Africa and Asia provide valuable services that CML patients in these regions often lack due to financial hardship. Donate TODAY!
 
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