SAVE THE DATE: CML Horizons 2022

Date: 28 - 30 October 2022 Location: Marrakesh, Morocco

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Dear members & friends of CML Advocates Network,

It is our pleasure to announce the dates for CML Horizons 2022. October 28 - 30 are the dates you need to block on your calendar, and the venue will be in Marrakesh, Morocco. The 20th CML Horizons should be an exciting event as we recognise the challenges that have been faced over the past two years. By providing the most current information and resources, CML Advocates Network aims to meet the needs of members by providing them with the most up-to-date information and resources, so that the CML Community can continue to: share, grow, and learn.

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CML Advocates Network co-founders receive the 2022 iCMLf Prize

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During the month of March 2022, the International CML Foundation announced the iCMLf Prizes for 2022. These prestigious global awards are conferred on individuals who have played a major role in advancing the understanding and management of CML.

On this ocassion, Giora Sharf and Jan Geissler, chronic myeloid leukemia (CML) patient advocates and co-founders of the CML Advocates Network, have been awarded the 2022 iCMLf Prize for their achievements in the field of patient advocacy using the experience of their own diagnosis to help other patients across the world.

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Calling CML patients living in Ukraine

CML Advocates Network stands in solidarity with the CML patients in Ukraine.

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We call on the international community to address the basic human needs and solve disruptions in healthcare and treatment in Ukraine and the neighbouring countries welcoming those patients.
 
If you are a CML patient, a relative or a friend of someone living with CML in Ukraine or have crossed over to a neighbouring country please contact us directly to obtain support based on individual needs by sending an email to Lidija Pecova at lidija@cmladvocates.net or text message on +389 78388235 WhatsApp / Viber & Telegram is also enabled.

CML Advocates Network statement supporting fellow members and patients in Ukraine.

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The CML Advocates Network is an active network specifically for leaders of Chronic Myeloid Leukemia (CML) patient groups, connecting 128 patient organisations in 93 countries on all continents. It was set-up and is run by CML patients

In the light of recent geopolitical events in Ukraine we fully support our members and patients and families living with CML.

Following the recent COVID-19 pandemic during which care for so many patients living with cancer has undeniably suffered it is unfortunate that the recent series of events has ocurred and will certainly prolong the effects on those living with cancer and with CML in Ukraine.

As a patient-led global organisation it has always been our belief that disease has no borders and we have always working together both within CML and with the wider patient community to advance the voice of those who have been touched by disease and their families in order to highlight its effect on society.

We stand by our fellow members and patients in Ukraine and with wider global community in asking for common sense and diplomacy to prevail so that normal people living their lives can continue as such and in particular those who find themselves living with cancer and in our case CML can access the care and treatment that they fundamentally need.

As CML Advocates Network we stand by our members and their families and the wider medical community affected during these times.

 

ASH 2021 CML Conference Report

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


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 2021 Conference report by clicking on the image below:

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Celia Marín - Head of Communications - celia@cmladvocates.net

 

 

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.

 

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