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

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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:

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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

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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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CML Atlas East Europe

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CML Atlas East Europe is the final product of East Europe and West Asia regional project run by CML Advocates Network from 1st December 2019 to 31st March 2020.

The activity started with a regional survey reaching our Eastern European patient members addressing a sample of respondents of CML advocates and CML doctors based in 19 countries from the Central and Eastern EU region. 

An online questionnaire was created by using cloud-based online survey development software to collect data on general information about CML, availability of TKIs, availability of PCR, running clinical trials and treatment-free remission data.

Results of this collection have been published on a website http://ceeatlas.cmladvocates.net where we can navigate through the menu section and be informed about key topics and issues in the different countries.

Visit the CML Atlas East Europe Website 3

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ASH 2020 Virtual Conference

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Originally to be held in San Diego, California, the 62nd ASH Annual Meeting and Exposition organised by the American Society of Hematology will be presented as an all-virtual event on December 5-8, 2020, given the continuing threat of the COVID-19 pandemic.

This year we will be attending this important meeting for the CML patient advocacy community for an invaluable educational experience and the opportunity to review many scientific abstracts highlighting updates on chronic myeloid leukemia.

We have prepared a selection of the most critical presentations on CML to be followed by the CML patient advocates. Please, note all times listed are in Pacific Time (PST):

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CML Advocates Network regional project: CML LATAM

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The Latin American - CML Advocates Network region is currently developing an amazing advocacy program with the aim of improving access to medicines, best treatment and monitoring test, for people living with chronic myeloid leukemia in the region.

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World CML Day 2020: Today, together, more than ever. For a life without CML

 

  

 

Every 22nd September, the CML Advocates Network leads the World CML Day global awareness campaign. On this day, chronic myeloid leukemia (CML) patients across the globe come together to raise awareness about our needs to the general public, politicians, and medical professionals across the world.

Today, together, more than ever due to the COVID-19 pandemic, the CML patient advocates need to connect as a worldwide community through digital tools by developing online activities.

Two months ahead of 22nd September, today we launch the World CML Day campaign, encouraging CML patients and patient organisations, health care providers, collaborators and all CML friends to join the global movement under a powerful motto:

 

"Today, together, more than ever. For a life without CML"

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EHA 2020 Congress: CML updates and tips to a virtual attendance

EHA25 VIRTUAL: 25th EHA Annual Congress: "Unfolding the future!”

 

Eha VirtualJust a week left until the European Hematology Association's annual congress starts as a virtual meeting this year! We hope many patients of the hematology community and specifically CML patient advocates, will be attending this impressive meeting from June 11-21, 2020 that is going to be held online due to the COVID-19 global pandemic.


Facing new challenges to bring an online platform to attendees, EHA2020 is offering this year a program with new types of sessions and schedulings through "On-demand" and "Live sessions" such as plenary presentations, award lectures, the presidential symposium and Satellite Symposia and Updates-in-Hematology organized by pharmaceutical companies.

Read more to see what has been offered specifically for patient advocates, hematologists and other stakeholders at #EHA25Virtual this year:

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Results of the TFR for CML patients' study published in Leukemia

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Bern, Switzerland, 28th May 2020.

 

“The psychological well-being of CML patients should be a consideration of healthcare professionals and addressed at all stages of the treatment-free remission journey”

  

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  • CML Advocates Network, the global network connecting 125 CML patient organisations in 93 countries, has published a paper in the prestigious journal Leukemia, considered one of the leading journals in hematology and oncology.
  • The study, the main author of which is Giora Sharf, himself a CML patient, has identified chronic myeloid leukemia (CML) patients’ unmet needs during the treatment-free remission (TFR) journey.

The results of the study published on the paper “Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs" indicate that there are points in the TFR journey where patients do not always get all the advice, information or support they want around psychological issues and tyrosine kinase inhibitors (TKIs) withdrawal.

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