chronic myeloid leukemia

  • Professor Tessa Holyoake Memorial

     

    Professor Tessa Holyoake Memorial - please post your tribute!

     

    The CML community is deeply saddened to learn of the passing of Professor Tessa Holyoake.Prof Tessa Holyoake in lab

    Prof. Holyoake, was a world-leader on Chronic Myeloid Leukemia (CML) achieving outstanding results in CML. Through her research she developed methods to purify the cells of leukaemia patients. Her most recent study analysed both CML and normal blood stem cells and the key to the survival of CML stem cells. The team led by Prof. Holyoake then developed a drug combination to simultaneously target these critical proteins and kill the CML stem cells.

    Last month Prof Holyoake was awarded a Royal Society of Edinburgh Royal Medal by the Queen of Britain for recognition of her contribution to the field of Life Sciences by her discovery of the existence of cancer stem cells in CML and her development of a new therapy for this condition.Professor Tessa Holyoake with queen   

    Tell us your tribute to Tessa now!           

    Through this page, we ask you to express your sympathies, to communicate your condolences and testimonials including your memories, thoughts and prayers. With your heartfelt messages we will compose an International Memorial Book honouring our admired and brilliant Professor Tessa Holyoake. Prof Tessa was a brilliant scientist and clinician and she will be sorely missed.

    Please, post your tribute and/or memories in the left side also feel free to add any photos with your message. We will use your tributes and photos in a Memorial Book.

    If you have any questions or trouble, please feel free to email us at

     

    Images: www.childrenwithcancer.org.uk; www.twitter.com 

  • 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.

  • 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.

  • 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
     
  • TFR 4 CML patients survey is closed!

    TFR 4 CML patients

     

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    The TFR for CML patients survey is now closed!

    The CML Advocates Network launched the online global survey “TFR 4 CML Patients”, available in eleven languages (English, Spanish, German, Italian, French, Finnish, Hebrew, Arabic, Danish, Japanese and Russian) to measure the viewpoints, needs and experiences of CML patients that are considering or have already started Treatment Free Remission (TFR). From March to July 2018, the survey has collected the feedback of more than one thousand CML patients worldwide. 

    The findings of the survey will help us to better understand what the concerns, challenges and motivations are during the decision phase, the first probation phase after stopping, and when attempting TFR has either worked or failed.

    Now, we start working on the analysis of the results of the treatment-free remission survey to provide the CML global community with a powerful evidence-based patient advocacy tool. Stay tuned for more information about #TFR4CML!

  • TFR results and resources

    LEUKEMIA PUBLICATION

    tfr 1Our paper  

    “Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs”has been published in the scientific journal Leukemia.

    Our TFR for CML patients’ study shows patient-based evidence on unmet needs of CML patients during the treatment-free remission journey.

     

    Open Access Article in Leukemia: https://www.nature.com/articles/s41375-020-0867-0

     

    EHA 2020 ABSTRACT AND POSTER

    Our Abstract CML Patients’ Views on Psychological Support Throughout the Treatment-Free Remission Journey” has been accepted at the 25th Congress of the European Hematology Association starting June 11.

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    Due to the COVID-19 outbreak, this year #EHA2020 has become a virtual event as have many other congresses, and the EHA Virtual Congress Platform will be accessible until October 15, 2020.

    You can check in detail the E-Poster presented in EHA25Virtual by clicking in the image below:

     

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    ECRD online 1ECRD 2020 ABSTRACT and POSTER

     

    We are happy to announce that the European Conference on Rare Diseases and Orphan Products 2020 has selected our abstract and poster "CML Patients’ Views on Psychological Support Throughout the Treatment-Free Remission Journey" to be presented at the conference that will take place online 14-15 May 2020.

    TFR Poster ECRD 2020

     

    The ECRD, organised by Eurodis and Orphanet, is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.

     

    ASH 2019 ABSTRACT

    We are proud to announce that the 61st American Society of Hematology Congress 2019 has selected our abstract "CML Patients’ Views on Psychological Support throughout the Treatment-Free Remission Journey" published online in the November supplemental issue of the prestigious magazine Blood

    To read the full text of the Abstract "CML Patients’ Views on Psychological Support throughout the Treatment-Free Remission Journey", please click on the image below:

  • The CML Advocates Network participating at ESH 2017

    esh footerThe 19th Annual John Goodman Conference on Chronic Myeloid Leukemia: Biology and Therapy were held in Estoril, Portugal on12-15 October 2017 organized by the European School of Haematology (ESH).

    This event gathers leading scientists in the field of Chronic Myeloid Leukemia treatment including Clinicians as well as Biologists and Medical laboratory technologists.

    Although the Programme does not contain specific Patient Advocacy sessions like in other scientific congresses, several patient advocates from different countries have been attending the conference. A number of CML advocates have been participating at this conference and sharing our CML patient's perspective.

  • The CML Clinical Trials data-base now lists 51 studies worldwide

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    The CML Advocates Network inofficial registry on clinical trials currently lists 51 studies:  

     

    • 28 CML studies currently recruiting patients
    • 1 non-CML study also in the recruiting phase
    • 22 studies that are no longer recruiting.

     

     

    Check here CML Trials Registry 

     

     

     

  • The CML Clinical Trials data-base now lists 54 studies worldwide

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    Our clinical trials registry currently lists 54 studies:

    • 32 CML studies actively recruiting patients, including
    • 2 paediatric trials
    • 7 treatment-free remission trials
    • 20 studies that are no longer recruiting

     

    Check here CML Trials Registry 

     

  • Treatment free remission

  • Treatment-free remission in chronic myeloid leukemia

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    Stopping Treatment in CML has now become a standard care with the publication of the NCCN and ESMO guidelines which include stopping treatment outside the context of clinical trials. The ELN recommendations are expected in few months and will relate to this hot topic as well.

    At the same time, there are many questions patients have about the process.

    In the following video Giora Sharf, the co-founder of CML Advocates Network and a CML patient on TFR for 3.5 years, interviews one of the world CML experts Prof. Giuseppe Saglio from University of Turin Italy, trying to answer some of the concerns CML patients have when thinking about stopping treatment. For example:

     

    What is treatment-free remission concept?

    What is the longer period of time that a patient has been on TFR?

    Who are the patients eligible for TFR?

    How many patients have to restart the treatment after TFR and when?

    How can the psychological aspects on TFR be overcome?

    What is the standard of monitoring a patient on TFR?

    To watch to video click here:

     

  • Venezuela: FUNDALMC - Fundación para la Asistencia al Paciente con Leucemia Mieloide Crónica

  • Welcome, ARCRare from Romania and HEMA from Macedonia!

    map 300420We hereby proudly welcome two new member organisations in the CML Advocates Network:

    Asociația Română de Cancere Rare/ Romanian Rare Cancers Association based in Romania and

    HEMA-Association for support of patients and caregivers of Hematology diseases based in Macedonia.

    The CML Advocates Network now counts a total of 125 member organisations in 93 countries worldwide! See the list of CML groups in the Network on our world map.

     

     

  • Welcome, ASUL, Uruguay!

    map 2019Now 121 patient organisations from 91 countries in the CML Advocates Network

    We are proud to welcome a new member organisation to the CML Advocates Network: Asociación Uruguaya de Leucemia ASUL,  based in Uruguay.

    The CML Advocates Network now totals at 121 member organisations in 91 countries worldwide!

    Read more to see the list of CML groups in the Network on our world map.

  • Welcome, FUNDALMC from Venezuela!

    map 300420We hereby proudly welcome a new member organisation in the CML Advocates Network:

     

    FUNDALMC - Fundación para la Asistencia al Paciente con Leucemia Mieloide Crónica based in Venezuela.

  • Welcome, Patients with chronic myeloid leukemia in Kyrgyzstan!

    map 040419Now 122 patient organisations from 92 countries in the CML Advocates Network

    We are proud to welcome a new member organisation to the CML Advocates Network: Patients with chronic myeloid leukemia in Kyrgyzstan.

    The CML Advocates Network now totals at 122 member organisations in 92 countries worldwide!

    Read more to see the list of CML groups in the Network on our world map.

  • Welcome, Philadelphia LMC, Algeria! Now 115 patient organisations from 86 countries in the CML Advocates Network

    We are proud to welcome a new member organisation to the CML Advocates Network: Philadelphia LMC based in Algeria. The CML Advocates Network now totals at 115 member organisations in 86 countries worldwide! See the list of CML groups in the Network on our world map.

     

     

  • World CML Day 2017 activities worldwide


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    This World CML Day 2017 has been a really exciting celebration for Chronic Myeloid Leukemia community. 60 CML Advocates Network patient organisations members of 51 countries from all continents joined our global campaign "Today Together: Today, together we are treated.Tomorrow we need cure!", raising awareness about CML patient perspective, needs, feelings and wishes.

    CML patient advocates and patient associations empowered not just the CML patients, relatives and carers but also health care providers, media, policymakers and the public in general.

    The CML Advocates Network was really positively touched by hundreds of CML advocacy activities where emotions and scientific CML information shared by CML advocates led the CML conversation on media, social media, health centres and many streets and institutions.

    We want to present you this World CML Day 2017 Report with most of the global activities as well as express our warmest gratitude to all participants who made last 22nd September a memorable day.

  • World CML Day 2018

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    2018 World CML Day

     

    "Today, Together.

      Improving access."

     

    “We see people dying of CML even though it's a well-understood, biologically well-understood, a well-treatable disease with five different therapies on the market.  But if you can't access testing, if you can't access the drugs, people are still dying from the disease. And so access is a big issue.  It's probably the biggest barrier that we have.”

    - Jan Geissler. Co-founder of the CML Advocates Network –

     

    Every year in 22nd September the CML global community lead by the CML patient Advocates holds the World CML Day. In 2017 more than 60 CML patient associations, members of the CML Advocates Network, support the awareness campaign “Today, together” and celebrate their courage and achievements! World CML Day 2017 Report

    Know more about what we are planning for the World CML Day 2018 and be ready to be part of the worldwide awareness with "Today, together. Improving access." 

  • 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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