CML Horizons 2020 conference moves to November 2020

HZ SC final

 

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. 

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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

Summary of the CML educational session from ASH 2019

 

Patients, borders, money, and mission:

A global perspective of chronic myeloid leukemia

- Summary of the CML educational session from ASH 2019 -

Chairs:
Hemant Malhotra, MD, FRCP; Mahatma Gandhi Medical College Hospital, Jaipur, India
Speakers:
  • The US Experience with Generic Imatinib in CML: Did Cost Predictions Meet Reality?

post ash 1Gary H. Lyman, MD, Fred Hutchinson Cancer Research Center, Seattle, WA

  • Meeting the Needs of CML Patients in Resource-Poor Countries: a Roundtable Discussion
Jerald P. Radich, MD, Fred Hutchinson Cancer Research Center
Hemant Malhotra, MD, FRCP
Mahatma Gandhi Medical College Hospital, Jaipur, India
Pat Garcia-Gonzalez, The Max Foundation, Seattle, WA
 

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New drugs for CML in clinical trials: ASH 2019

This summary will cover a few of the important topics regarding CML that were presented at ASH 2019 including:

  1. New Drugs for CML
  2. Update on the French and German Interferon combination studies
  3. Age-adjusted treatment in CML- Elderly and Pregnancy report for young CML patients. (our report regarding pediatric CML was published separately).
  4. Generic Imatinib 

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Results from ASH: Discontinuation of TKIs in children with CML

pediatric report1 defTKIs seem to allow most CML patients, including children, to live a normal lifespan under continued treatment. However, the medication’s long-term side effects such as growth impairment and the need to take the drug for the rest of life, are an issue of concern, especially for children. Recent clinical trials in adults have suggested that some CML patients in deep molecular response on TKI therapy may have a chance to discontinue TKI treatment. However, the biology of CML in children may differ from adults with more aggressive presentation, and data of TKI discontinuation in CML children are limited.

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Update on stopping CML treatment: Report from the American Society of Hematology Congress 2019

Achieving therapy-free remission (TFR) continues to be amongst the most discussed topics in CML at the moment. At this year’s ASH congress, the first plenary oral session on CML was dedicated to the topic of TFR and there were many posters as well. 

ash higherOverall, there is no big news in the area of TFR, but research continues intensively. Across all the different studies, about half of all patients that are stopping therapy after years of deep molecular response to TKI (below MR4 / BCR-ABL below 0.01) need to restart treatment. The main open questions remain to predict the individual patients’ likelihood of a successful stop,  the need for life-long PCR monitoring to catch potential late recurrences of CML, and whether a second attempt to withdraw therapy is feasible and safe.

 

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ASH 2019 in Orlando, USA: CML patient advocates information

logo bannerJust a few days left until the 61st ASH Annual Meeting and Exposition opens its doors on 7th until 10th December in Orlando, USA. We are hoping to see many CML Advocates at #ASH19!

This is the world’s most comprehensive hematology event of the year and it is very important to prepare the meeting as CML patient advocates in order not to miss out on any key session about chronic myeloid leukemia.

Below you can find some key information about CML sessions hoping it will assist you to prepare and outline your days and make the most out of your time whilst at #ASH19.

We are especially proud this year because of the strong presence of the patient advocacy evidence-based with two important posters of the leukemia patient advocacy community:

  1. The CML Advocates Network Paper “Chronic Myeloid Leukemia Patients’ Views on Psychological Support Throughout the Treatment-Free Remission Journey”
  2. The Acute Leukemia Advocates Network Paper ”Identifying Differences in the Quality of Life of Patients with Acute Leukemia: A Global Survey”

Click on "Read more" and check what is offered for patient advocates, hematologists and other stakeholders interested in CML at the American Society of Hematology Annual Meeting this year.

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EHA 2019 Highlights: The CML patient advocates perspective

More than 12,000 hematology professionals from around the world met together in Amsterdam, The Netherlands for the 24th European Hematology Association (EHA) Congress. 

eha9This has been the largest EHA Congress ever recorded with a growth of more than a thousand attendees from last year.

Once again, our CML patient advocates team has been participating in this important meeting for leukemia patients as well as for the patient advocacy community.

Our co-founders Jan Geissler, Giora Sharf and Jana Pelouchova as well as our Chair Sarunas Narbutas and several Steering Committee members and CML CAB members as Zack Pemberton-Whiteley or Felice Bombaci, plus our staff members, have been attending and actively participating in many sessions of the Congress.

Know more about what happened at #EHA24 on CML:

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CML Advocates Network appoints Denis Costello as its first ever Executive Director.

 

d low2.jpg.001.jpeg.001We’re proud to announce that Denis Costello has recently been appointed as the first Executive Director of the CML Advocates Network, the global umbrella organisation dedicated to empowering patient leaders in Chronic Myeloid Leukemia (CML).

Denis comes to our CML family from EURORDIS, Rare Diseases Europe, where he worked since 2008 as the organisation’s Online Communications Manager.

During that time he has led the launch and operation of RareConnect, a global, multilingual social network for patients and families living with rare diseases (see www.rareconnect.org) which saw him work with over 1000 patient organisations of all sizes and from all over the world who now use the platform to host their online patient communities.

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European Society of Medical Oncology Congress, Barcelona, 2019

 

From 27th September to 1st October, the European Society for Medical Oncology Congress takes place in Barcelona. 

The ESMO Congress is the appointment in Europe for clinicians, researchers, patient advocates, journalists and the pharmaceutical industry from all over the world to get together, learn about the latest advances in oncology and translate science into better cancer patient care. 

Approximately 30.000 oncology professionals from all around the world will be able to do more for their patients.

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€ 20,000 donated to the CML Advocates Network during the EHA 2019 Congress!

wcmldlogoThe World CML Day

CML results from a transformation of a stem cell caused in about 95% of Chronic Myeloid Leukemia patients by the change of chromosomes 9 and 22, which is why World CML Day (9/22) carries a symbolic significance for the patient community. 

This day was initiated in 2008 by the patient community to bring awareness about patients’ needs to the general public, politicians and medical professionals across the world. 

To face this challenge, every 22 September the entire Chronic Myeloid Leukemia community stands together to raise awareness about one life-changing reality – living with CML.

The CML Advocates Network annually coordinates the World CML Day global awareness campaign to support our 122 members worldwide.

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