CML Advocates Network Steering Committee 2021

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We are excited to formally welcome and introduce the three new members of the CML Advocates Network Steering Committee 2021:

  • Zack Pemberton-Whiteley, Chief Executive Officer of Leukaemia Care, United Kingdom. Region Western Europe Representative.
  • Eunice Orekha, President of Max Care Foundation, Nigeria. Region Middle East & Africa Representative.
  • Felipe Tapia, Vice President of Maxi Vida Association, Chile. Region Latin America Representative.

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In Memoriam Professor Michele Baccarani

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We have learnt with deep sadness the passing away of Professor Michele Baccarani on 20th December 2021.

Dr. Baccarani was an outstanding renowned doctor, a great scientist, an excellent hematologist and one of the most important leaders on chronic myeloid leukemia worldwide.

He dedicated his life to research against leukemia, making a significant contribution to change the natural history of this disease and impact on the quality of life of patients.

The CML Advocates Network on behalf of the global CML patients community all around the world, are profoundly grateful to him for his remarkable work on the benefit of CML patients, moreover for the support provided to the birth of our member organisation, AIL Group of CML patients in Italy.

It was a privilege and an honour for us to know him and learn from him.

We wish his family, friends and colleagues all the strength and wisdom they need in these difficult times.

Rest in peace.

 

In Memoriam of Euzebiusz Jan Dziwiński

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To the memory of our dearly departed friend. We will miss you with all our hearts. We may have lost you but your spirit lives on long after you’re gone.

It is with deep sadness that we inform the CML community about the passing of our friend, colleague, and CML patient advocate Euzebiusz Jan Dziwiński on 5th December 2021, at the age of 71.

CML Advocates Network loses a close friend who was also a very active patient advocate and member of the CML family from the outset of the global network.

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In Memoriam of Trevor Steyn

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It is with great sadness that we share that our friend, colleague, and CML patient advocate Trevor Steyn passed away on 9th November 2021 at the age of 63.

CML Advocates Network loses a friend, a CML patient for over 32 years and also a very active patient advocate, leading the CML patient organisation CML SA founded in 2013 to offer up-to-date information, emotional support and advocacy on behalf of all CML patients in South Africa.

Trevor was a very smart person, someone who was very outspoken at our network meetings with very well reflected questions, and such a wonderful and caring individual. In words of our colleague Bahija Gouimi from AMAL, Morocco, “We lost a devoted leader and a great friend. I will really miss you calling me my dear Sister. Know that you're unforgettable. I will really miss you. I send my prayers and support to Delphine, your amazing wife and your family during this difficult time.

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ASH 2021 Annual Meeting

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The 63rd ASH Annual Meeting and Exposition organised by the American Society of Hematology will be presented at the Georgia World Congress Center in Atlanta, Georgia – and virtually – from December 11-14, 2021.

This year we will be attending this important meeting for the CML patient advocacy community to discover the newest advances in hematology, review many scientific abstracts highlighting updates on chronic myeloid leukemia and prepare a comprehensive report of of the most critical presentations on CML.

Read more about the agenda to be followed by the CML patient advocates. Please, note all times listed are in US Eastern Time (EST):

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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  

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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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