EHA 2021 Congress: CML highlights

EHA2021 VIRTUAL: 26th EHA Annual Congress

 

Eha logo1Only two weeks left to start the European Hematology Association Congress 2021 from June 9 to 17 and get informed about the highlight state-of-the-art clinical practice, recent advances, new data and views from different stakeholders as well as international organizations.

Once again, we will be attending this key meeting for the CML patient advocacy community that will be held online due to the impact of COVID-19 for the second time in its history, and sharing with you the information on our social media channels and website.

This is an excellent opportunity to explore the newest developments in CML and beyond and new evidence-based approaches to diagnosis and treatment. Moreover, this year the European Hematology Association is introducing several new session types at #EHA2021 as on-demand Guidelines Sessions or live Thematic Debates.

Check out the CML featured sessions we have summarized for you:

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In Memoriam of Minella López

Minella 2

 

It is with great sadness that we share the loss of another friend and CML patient advocate Minella López, President of FUNDALMC, the patient organisation supporting CML patients in Venezuela. She passed away on 4th April 2021, due to COVID19 infection.

Minella was a fighter, passionate person, and a lover of structured things who made enormous efforts on behalf of the CML patient community in Venezuela, reaching the scope that FUNDALMC has today.

She always received full support of her colleagues within the Foundation, aligning the advocacy work with the CML patient needs for better access to medicines and health care in her country.

One of the most important milestones Minella achieved with the support of the CML advocates was the establishment of a legal, solid and well-structured patient organisation in Venezuela so that no CML patient is left behind.

"Mother hen, Minella was a beautiful, good-hearted, perfectionist, persevering, kind, and compassionate woman. She has left us too soon but her sense of commitment to the patient needs and advocacy work will inspire us to drive high-level projects on her behalf to keep on supporting CML patients in Venezuela. We will do our best to push forward to ensure her dreams, esteem vision, and memory continue", as FUNDALMC Board and many patients stated.

We wish Minella's family and all friends all the strength and courage they need in these difficult times. 

May there be comfort in knowing that someone so special will never be forgotten.

Rest in peace, dear Minella.

 

Big Data and Chronic Myeloid Leukemia

 

How Big Data and large data sets are helping to ask and answer previously unknown questions and answers in research on hematological diseases.

by Jan Geißler, co-founder of the CML Advocates Network  

Logo Harmony MAIN Regular 

Big Data – the term has been a topic of controversial debate for several years.

Why, despite all the criticism, should we gather and analyze big amounts of data? Why does it hold great potential for health research?

How does the HARMONY project launched by the EU’s Innovative Medicines Initiative make use of Big Data, and to what extent do patient organizations have a central role to play in this?

And what role does it play in CML? 

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ASH 2020 CML Conference Report

The 62nd ASH Annual Meeting and Exposition organised by the American Society of Hematology was finally held virtually on December 5-8, 2020, given the coronavirus outbreak situation.


We have prepared a Conference Report in order to provide you the latest updates on the management of chronic myeloid leukemia and the most important highlights presented in this key meeting for the CML community.


Download the ASH 2020 Conference report by clicking on the image below:

ASH20 Report low

 

 

In Memoriam of Ahmed Awad

The entire chronic myeloid leukemia community mourns the loss of our dear friend Ahmed Awad from Egypt.Ahmed

Ahmed was a chronic myeloid leukemia patient himself for many years and founder of our member organisation in Egypt "Power of CML" in June 2014. He was a dedicated patient advocate in his country as well as a strong supporter of the global initiatives of the CML Advocates Network, as co-organizer of the World CML Day events in the Middle East and Africa region in the past years, among others.

In Ahmed owns words, "Once I got diagnosed with CML, I started getting depressed. However, I recognized how to overcome this feeling and how to help other patients to know more about the development of the latest remedy methods."

Our Steering Committee representative of the region, Bahija Gouimi, President of AMAL in Morocco, states: "I lost my best friend. He was a son for me. He was a passionate advocate, always fighting to improve the quality of drugs and patients' lives in Egypt."

We have lost a dear friend and valued dedicated colleague. Our grief and sadness at this time are little compared to what Ahmed’s family must be feeling. Our hearts and prayers go out to them.

Rest in peace, dear Ahmed.

 

ELN Recommendations 2020

ELN General

 

The therapeutic landscape of CML has profoundly changed over the past 7 years so the European Leukemia Net convened an expert panel to critically evaluate the current evidence and update its previous recommendations.

The new "European LeukemiaNet 2020 recommendations for treating chronic myeloid leukemia" were published in March 2020 in the prestigious journal Leukemia.

In order to improve the information available to patients and support them to access these guidelines, we have developed once more a patient-friendly summary of recommendations for CML management based on the ELN Recommendations 2020.

It is made available at this stage in 20 languages and more are coming. We are welcome to initiate community translations by member organisations of CML Advocates Network under the provision that members have them co-validated by a local CML specialist with whom the member organisation regularly works. If you would like to help us making the summary available in your language, please, contact us at info@cmladvocates.net.

This is a result of a genuinely patient-led project and aims to help patients to better understand CML management and communicate with their doctors on treatment and diagnostics.  

 

Download the Patient-friendly Summary of the ELN 2020 CML Treatment Recommendations

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