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 12 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

Read more ...

CML Atlas East Europe

Atlas 2

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

Read more ...

ASH 2020 Virtual Conference

ASH2020

 

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):

Read more ...

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.

Read more ...

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:

Read more ...

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”

  

Leukemia logo 1

Leukemia logo 2

 

  • 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.

Read more ...

CML and COVID-19: New Website section on cmladvocates.net

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The CML Advocates Network is closely monitoring the current COVID-19 outbreak worldwide. 

We are happy to announce the launch of a new website section to better inform the CML patient advocacy community on what is happening around Chronic Myeloid Leukemia and COVID-19 globally.

In this section, we will regularly publish breaking news, scientific information and other support resources which may be of interest.

Advance your knowledge on the CML and COVID-19 global situation with access to the following topics:

Read more ...

CML Horizons 2020 conference moves to November 2020

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In light of the circumstances surrounding the global COVID-19 outbreak, the CML Advocates Network Steering Committee met via video-conference on March 19 to decide on the future of our annual CML Horizons conference which was due to take place in San José, Costa Rica from May 1-3.
 
Given the health risks posed to patients as well as the current travel restrictions for which there is no firm indication as to how long they may continue, the Steering Committee has decided to cancel the Costa-Rica CML Horizons conference and to re-schedule the event, circumstances permitting, in Europe in November 2020. 

Even though it has been a difficult decision, the health of conference delegates remains our priority.  We will continue to closely monitor the global situation and incorporate WHO recommendations on safety and travel into our sources of advice.

We will confirm the new dates, venue and further details about the conference in the coming days.

We would also like to express our sincere gratitude to all CML patient advocates, doctors, service providers and volunteers who have helped us with the organisation and program planning for Horizons 2020 Costa Rica. 
 
Our commitment now is to work hard to reschedule and prepare an excellent CML Horizons conference for which we intend to exceed the expectations of conference attendees as they continue to learn, share and grow all together.
 
Stay tuned and follow our social media channels for more information!

 

 

Coronavirus disease and CML patients

The novel Coronavirus and the COVID-19 Disease

Information for Chronic Phase Chronic Myeloid Leukemia Patients

State of the Art as of 08 March 2020

 

Dr Michael Deininger (USA), Dr François Guilhot (France), Dr Jeroen Janssen (Netherlands), Dr Tim Hughes (Australia), Dr Jeffrey Lipton (Canada), Dr Franck Nicolini (France),

Dr Jerry Radich (USA), Dr Delphine Rea (France), Dr Giuseppe Saglio (Italy), Dr Suzanne Saussele (Germany), Dr Rick Silver (USA), Dr Juan Luis Steegmann (Spain).

 

Introduction

SARS-Cov 2 is a novel coronavirus that belongs to the large Coronaviruses (CoV) family. It emerged in December 2019 in Wuhan, China. This new virus is responsible for an illness called COVID-19 ranging from a simple cold to a more severe respiratory infection. The virus is spreading across the globe, representing a pandemic alert. 

Transmission 

Conventional routes of transmission of the new coronavirus consist of contact with respiratory droplets from infected persons. People may also possibly be infected when touching a surface or object that has the live virus on it then touching their mouth, eyes or nose although it may not be the main route of infection since in general, survivability of coronaviruses on surfaces is considered as poor. Finally, the new coronavirus can be detected in the gastrointestinal tract, saliva and urine, so these routes of potential transmission are currently under investigation. 

Read more ...

CML Advocates Network statement on Coronavirus Disease 2019 (COVID-19)

who 1The CML Advocates Network is closely monitoring the information concerning the Coronavirus Disease 2019 (COVID-19) worldwide.

At the present time, all our activities including the CML Horizons Conference 2020 continue as planned.

In the event that the situation changes, we will immediately inform our members and the wider CML community of the new circumstances through our website and communication channels. For updates, please follow us on Twitter, Facebook or LinkedIn.

We are committed to guarantee the safety of our participants with all possible measures and are currently seeking CML-specific medical advice from CML medical experts.

Please, make sure you follow the recommendations provided by the World Health Organization (WHO) and your local authorities.

For further information about the CML Horizons Conference 2020 or any other CML Advocates Network activity, please contact us at info@cmladvocates.net

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