chronic myeloid leukemia

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    The Leukemia Patient Advocates Foundation is a patient-led non-profit foundation in Switzerland. Its mission is to improve the lives & survival of patients affected by Leukemia. It is a platform for discussions & best practice sharing to Leukemia patient groups worldwide. The foundation collaborates with all stakeholders involved in research, policy, treatment and care. It also acts as a platform for patient organisations concentrating on educating, connecting and supporting patient group leaders.

    The foundation acts as a legal platform for self-sustained patient advocacy networks: The CML Advocates Network (118 patient organisations in 88 countries), the MPN Advocates Network, the CLLAdvocates Network and the Acute Leukemia Advocates Network (ALAN).

    Vision and Mission of the Leukemia Patient Advocates Foundation

    Our vision is a world in which all leukemia patients have access to the best treatment, care and support available.

    Our mission is:

    • To improve the lives and survival rates of patients affected by leukemia, as well as their relatives, worldwide
    • To support patient leaders in providing help and support to leukemia patients and their relatives
    • To provide a platform for education and best practice sharing of leukemia patient groups world wide
    • To collaborate with other stakeholders involved in research, treatment and care of leukemia patients

    The Leukemia Patient Advocates Foundation hosts the global CML Advocates Network, MPN Advocates Network, CLLAdvocates Network and the last one, the Acute Leukemia Advocates Network (ALAN).

    CML Advocates Network

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    Hosted by the Leukemia Patient Advocates Foundation, the global "CML Advocates Network" (https://cmladvocates.net) connects 118 patient organisations in 88 countries on all continents. The CML Advocates Network is a worldwide network designed and run by CML patients and carers who are registered patient group advocates and organisers.

    The Leukemia Patient Advocates Foundation hosts the "CML Horizons" conference as the annual global leadership meeting that welcomes patient leaders from all world regions (https://www.cmladvocates.net/cmlhorizons). An elected "CML Horizons Steering Committee", as a steering committee (as defined in the foundation's statutes) within the Leukemia Patient Advocates Foundation, carries all responsibility to run the "CML Horizons" conferences. Following elections by the worldwide CML community in May 2017, the CML Horizons Steering Committee consists of the following nine members of which six are CML patients themselves, and which represent all major regions of the world: 

    • Giora Sharf (Israel, co-founder & permanent member of the Steering Committee)
    • Jan Geissler (Germany, co-founder & permanent member of the Steering Committee)
    • Jana Pelouchová (Czech Republic, co-founder & permanent member of the Steering Committee)
    • Ferdinand Mwangura (Kenya, region: Middle East & Africa)
    • Gail Sperling (USA, region: North America)
    • Zack Pemberton-Whiteley (UK, region: Western Europe)
    • Mercedes Arteaga (Argentina, region: Latin America)
    • Rod Padua (Philippines, region: Asia-Pacific)
    • Sarunas Narbutas (Lithuania, region: Central and Eastern Europe & West Asia)

    MPN Advocates Network

    mpn-advocates-logoHosted by the Leukemia Patient Advocates Foundation, the global "MPN Advocates Network" (https://www.mpn-advocates.net) was founded by representatives from the Netherlands, Spain and the UK. The MPN Advocates Network's immediate goal is to increase the international scope of the organisation by contacting MPN patient groups in other countries and inviting them to become part of the network. The initial focus will be groups in Europe, but the intention is to be a world-wide organisation.

    The MPN Advocates Network hosts the "MPN Horizons", the international conference for MPN patient advocacy leaders, works on educating patient advocates, building patient groups’ capacity, implementing advocacy initiatives with a real impact in the countries and finally enforcing cooperation in the global “MPN Advocates Network”.

    A Steering Committee within the Leukemia Patient Advocates Foundation carries all responsibility to run the MPN Advocates Network. The members of the Steering Committee are:

    • Jonathan Mathias, Chair (UK)
    • Cheryl Petruk (Canada)
    • Felice Bombaci (Italy)
    • Giora Sharf (Israel)
    • Ilse Jans (Belgium)
    • Peter Loffeelhardt (Spain)
    • Robi Zelig (Israel)            
    • Werner Zinkand (Germany)
    • William Crowley (U.S.A)

    Giora Sharf (Israel), as a trustee of the Leukemia Patient Advocates Foundation, supervises the finances of the MPN Advocates Network and its compliance with Swiss Regulatory requirements regarding the non-profit status.

    For more information, please visit the MPN Advocates Network website

    CLL Advocates Network

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    Hosted by the Leukemia Patient Advocates Foundation, the establishment of the CLLAdvocates Network (CLLAN) (https://www.clladvocates.net) and commencement of the new network’s activities aims to ensure the successes seen in CML are replicated for CLLand common goals are shared. The CLLAdvocates Network (CLLAN) was founded by representatives from Canada, Czech Republic, France, Israel, Portugal, UK and the United States. The CLLAdvocates Network Steering Committee consists of the following 8 members, of which 3 are CLLpatients and one a carer. The other members are CLLpatient advocates:

    • Lorna Warwick, Chair (Canada)
    • Nick York (UK)
    • Pierre Aumont (France)
    • Felice Bombaci (Italy)
    • Brian Koffman (USA)
    • Jana Pelouchova (Czech Republic)
    • Michael Rynne (Ireland)
    • Sofia Sá Cardoso (Portugal)

    The CLLAdvocates Network’s immediate goals include connecting across the globe with CLLpatient groups, CLLpatient advocates and patient organisations supporting blood cancer patients including CLL.

    The CLLAdvocates Network hosts the "CLLHorizons", a unique opportunity for CLLpatient organization representatives to meet and network, giving them the opportunity to discuss issues facing CLLpatients and hopefully start to think about what they could do better to help CLLpatients in their communities. 

    Acute Leukemia Advocates Network  (ALAN)

    ALANThe newest patient advocates network within the Leukemia Patient Advocates Foundation is the Acute Leukemia Advocates Network (ALAN)  (https://acuteleuk.org).

    The ALAN is an independent global network of patient organisations representatives and patient organisations, dedicated to

    • changing outcomes of patients with acute leukemias by strengthening patient advocacy in that area by developing patient information and specific support for patients with acute leukemias and their carers in all countries; 
    • strengthening patient organisations by sharing best practices and providing toolkits in patient advocacy;
    • creating awareness about acute leukemias and how to better support leukemia patients; advocating for better treatment, care & access to healthcare services;
    • improving education for healthcare professionals serving leukemia patients as well as collaborating with other initiatives and stakeholders with similar goals.

    Similar to the CML Advocates Network, MPN Advocates Network and CLLAdvocates Network within the LePAF, the ALAN is not a network mainly targeting (english-language) patients and carers directly, but acts as a “network of organisations”. It aims to build capacity in the members of the network to deliver tailored services to acute leukemia patients and carers on the national level, while joining forces between organisations on the policy and research level across countries.

    The first ALAN Steering Committee consists of the following patient advocates:

    • Zack Pemberton-Whiteley, Chair (UK)
    • Sofia Sa Cardoso,Treasurer (Portugal)
    • Anita Waldmann (Germany)
    • Sophie Wintrich (UK)
    • Diego Villalón (Spain)
    • Jan Geissler (Leukemia Patient Advocates Foundation representative) 

    Board of the Leukemia Patient Advocates Foundation

    The foundation's statutes mandate the foundation board only with supervisory and financial management roles, while its statutory committees, as listed above, are fully self-governed, autonomous initiatives. Projects are run by the committees, not by the foundation board. Formally, the Leukemia Patient Advocates Foundation is represented by the following trustees of the Foundation:

    • Jana Pelouchová (President, Czech Republic)
    • Jan Geißler (Vice President and Managing Director, Germany)
    • Giora Sharf (Treasurer, Israel)
    • Erik Aerts (Board Member, Switzerland)

    Management Team of the Leukemia Patient Advocates Foundation

    • Lidija Pecova - Programme Manager ()
    • Celia Marín - Programme Manager ()

    Registered Address & Contact Details

    We are purely patient-run, non-profit and public interest, and we have no legal department. Talking to each other first is always the best solution. If you see a challenge for whatever reason, please contact us directly - we are very confident any issue can be solved.

    Leukemia Patient Advocates Foundation
    P.O.B. 453
    CH-3000 Bern 7
    Switzerland
    Registration: Chamber of Commerce of canton Bern, Switzerland – CH-036.7.052.001-2

    Written correspondence is preferred to be sent to the following address:

    LeukaNET e.V.
    Am Rothenanger 1b
    85521 Riemerling
    Germany
    Email:

     

     

     

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    The 2017 American Society of Clinical Oncology (ASCO) Annual Meeting is taking place June 2–6 in Chicago.

    At the CML Education Session, CML expert Dr. Ehab Atallah, MD, associate professor of medicine in the division of hematology and oncology at the Medical College of Wisconsin, has been speaking during an Education Session about discontinuation of tyrosine kinase inhibitors in chronic myeloid leukemia (CML) presenting about the "Promise of stopping TKIs: Is it ready for prime time"?

    Even though no new data was presented (see ASH 2016 Report), it has been very interesting to listen to the US perspective.

     

     

     

  • Asco CML pediatric 1

    The 2017 American Society of Clinical Oncology (ASCO) Annual Meeting were taking place June 2–6 in Chicago.

    At ASCO, Lia Gore, MD, co-director of the Hematological Malignancies Program at the University of Colorado Cancer Center and pediatric oncologist at Children’s Hospital Colorado, presented exciting data about Dasatinib in pediatric CML patients: CML in children is ultra-rare, making it very difficult to study - CML cases make up only 3% of all leukemias in children.

    The data presented here has been submitted to FDA and EMA for the approval in pediatric use, and is quite impressive: The side effect profile seems to be very favourable and the inhibition of bone growth in children on TKIs seems to be less of an issue in Dasatinib than in Imatinib

    However, given that administration of medicines in children and being adherent to therapy is often a challenge for young CML patients (and their parents), the availability of Dasatinib also as a powder-based suspension as well as the fact that the drug can be taken without or with food may make life much easier.

    The investigators concluded that Dasatinib may be considered as a new standard of care for pediatric CML patients. 

  • ASCO17 tki discontinuation posterThe 2017 American Society of Clinical Oncology (ASCO) Annual Meeting were taking place June 2–6 in Chicago and our cofounder Jan Geissler has collected all the highlights of this important meeting for chronic myeloid leukemia community.

    In the recent past, not only hematologists but also patient groups have expressed their concern that "stopping CML therapy out in the field" may lead to bad practice by doctors not following expert recommendations, and have suggested stopping TKI therapy should only be done in clinical trials.

    Of course, especially after NCCN has updated its CML guideline and has given guidance on stopping treatment despite the prematurity of data, we could expect that this would be largely ignored out in the field.

    So here is Jan Geissler's shock poster at #ASCO17: The high arts of CML therapy and the sad reality - we need to be grateful for investigators spelling it out so clearly. He is shocked, as his gut feeling about bad practice is now supported by data.

  • ashlogoJust two weeks left until the 59th ASH Annual Meeting and Exposition opens its doors on 9th December in Atlanta, USA. We are hoping to see many CML Advocates at #ASH17!

    This is the world’s most comprehensive haematology event of the year and it is very important to be ready before the meeting as CML advocates in order not to miss out on any important session about chronic myeloid leukaemia.

    We are happy to share with you 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 #ASH17.

    Click on "Read more" and check what is offered for patient advocates, haematologists and other stakeholders interested in CML at American Society of Hematology Annual Meeting this year. If you are coming to #ASH17, don't miss any of them, they will all be really interesting!

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    - Written by Sharf Giora, CML Advocates Network -

    ASH 2017 is the 10th ASH conference I am attending in a raw, and I am being asked many times why do I like this conference and travel such a long distance to attend it every year.

    AshGiora1The main reason that I, as a patients representative, leave home and travel to ASH is to hear and learn about the last innovations in the treatment of blood cancers and bring these news to patients in my country and across the globe, to empower them with knowledge, and mainly hope. that research in the various diseases is ongoing and if they are in a need for a new treatment, maybe it is just around the corner. The second reason why I go to ASH, which is not less important, is that this is the best place and opportunity to meet in a short time all the stakeholders that I am working with, like Drs and scientists from Israel and the globe, Pharma representatives from medical and patients relations, and other patients advocates, and to discuss with all of them how to continue and strengthen our collaboration.

    - Giora and Nadav, a board member of
    Flute of Light at ASH 2017  -
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    Our Programme Manager Celia Marín on behalf of the Leukemia Patient Advocates Foundation participated at the “Council of European Rare Disease Federations” held in Paris on 26-27 October 2017 by the Rare Diseases Europe EURORDIS with 26 other patient organisation representatives from different communities such as Myeloma Patients Europe and Lymphoma Coalition.The two-day meeting was full of very informative and interesting sessions, starting with a joint meeting with the Council of National Alliances.

  • EHA logoThe European Hematology Association held the “EHA-SWG Scientific Meeting on Integrated Diagnosis Strategies in Oncohematology for the Management of Cytopenias and Leukocytosis” on February 8-10, 2018 In Barcelona, Spain.

    The scientific meeting covered all practical aspects of diagnosis of haematological disorders suspected when encountering leukocytosis or cytopenia, with a strong focus on morphology, pathology and flow cytometry.

    toni1During three days, the hematological experts put under the spotlight very interesting topics as the following: Pre analytical and analytical considerations; Towards integrated diagnoses: basics of morphology, flow cytometry, cytogenetics and molecular karyotype, molecular technologies; Morphology of granulo-monocytopoiesis: normal, MDS, AML and MPN; Lymphopoiesis, leukemia and lymphoproliferative disorders; New drugs / therapeutic approaches and personalized medicine or Patient’s follow up: MRD and detection of the emergence of resistances.

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    horizons17

     

    Chronic Myeloid Leukemia is a Rare Disease

    What is a Rare Disease? 

    The actual prevalence of rare diseases can vary between populations, making it difficult to provide a precise numerical definition. In Europe and many other regions, a disease is defined as rare when it affects fewer than 1 in 2000. One rare disease may affect only a handful of patients in the European Union and another may touch as many as 245,000. In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases. Click here to check more information about Rare Diseases at Eurordis, Rare Diseases Europe.

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    Patients wishing to participate in a clinical study often look for a central source of information where they can find easy-to-understand facts on ongoing trials. 

    Official trial registries like clinicaltrials.gov or other trial registries are available but tend to be complex and difficult to use for patients.

    To fill the need for a single source of information on CML studies in plain language, CML Advocates Network set up an unofficial online CML Trials Registryin 2013.

    The database contains a brief description of ongoing CML trials initiated by academia (universities) or pharmaceutical companies.

    Currently, 24 clinical studies are listed that are actively recruiting patients. Another 11 studies are still ongoing but no longer including new patients.

  • In this section, we are collecting and publishing news focused on treatment-free remission in CML on a regular basis. We offer you to check the "News on TFR" section to be informed about latest advances in stopping treatment for CML patients.

     

    Final 3-year Results of the Dasatinib Discontinuation Trial in Patients With Chronic Myeloid Leukemia Who Received Dasatinib as a Second-line Treatment

    Okada, Masaya et al. Clinical Lymphoma, Myeloma and Leukemia , Volume 18 , Issue 5 , 353 - 360.e1 DOI:  https://doi.org/10.1016/j.clml.2018.03.004

    Abstract


    TFR study june articleSecond-generation tyrosine kinase inhibitors (TKIs), including dasatinib and nilotinib, are better at inhibiting BCR-ABL kinase activity than the first-generation TKI imatinib mesylate. Second-generation TKIs were introduced initially as a second-line treatment for the patients with disease resistant or who were intolerant to imatinib and resulted in a remarkable response rate.1 Because subsequent studies demonstrated that second-generation TKIs show superior efficacy to imatinib for newly diagnosed chronic myeloid leukemia (CML),2, 3 their use as a first-line treatment has increased.

    Although accumulating evidence has shown that discontinuing imatinib is feasible, trials of patients receiving second-generation TKIs are lacking. Therefore, we conducted a phase II trial to investigate whether long-term TFR was achievable after discontinuing second- or subsequent-line dasatinib treatment after imatinib resistance or intolerance (the DADI trial [dasatinib discontinuation]).

    We have confirmed the feasibility of dasatinib discontinuation in patients without imatinib-resistant disease who maintain MR4.0 for ≥ 1 year. Moreover, we have demonstrated that both the characteristics of leukemia cells (an intrinsic factor) and the host immunologic responses (an extrinsic factor) are involved in maintenance of TFR. These findings could be useful for identifying patients who will derive the greatest benefit                                                           from TKI discontinuation and enable optimization of the algorithm used for treatment of CML patients taking TKIs.

    To read the full article please visit the Clinical Lymphoma, Myeloma, Leukemia Journal

     

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    Considerations for Successful Treatment-free Remission in Chronic Myeloid Leukemia

    Considerations for Successful Treatment-free Remission in Chronic Myeloid Leukemia. Goldberg, Stuart L. et al. Clinical Lymphoma, Myeloma and Leukemia , Volume 18 , Issue 2 , 98 – 105. DOI: https://doi.org/10.1016/j.clml.2017.11.006

    TFR DOI 1Abstract

    BCR-ABL1 tyrosine kinase inhibitors have dramatically improved outcomes for patients with chronic myeloid leukemia, and current studies are investigating whether some patients may be able to suspend therapy yet maintain response in a state known as “treatment-free remission” (TFR). Results from ongoing studies suggest that ≈ 40% to 60% of patients in sustained (generally ≥ 2 years) deep molecular response (defined as a 4-log or deeper reduction in BCR-ABL1 transcripts, depending on the study) who attempt TFR may successfully remain off treatment. Results from TFR clinical trials, patient considerations for attempting TFR, and potential predictive factors associated with successful TFR are reviewed herein.

    To read the full article please visit the Clinical Lymphoma, Myeloma, Leukemia Journal

     

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    fdalogoFDA updates the label of Tasigna to reflect that certain patients with a type of leukaemia that may be eligible to stop treatment after sustained response

    Discontinuation in treatment marks a first in Chronic Myeloid Leukemia

    FDA News Release. December 22, 2017.

    The U.S. Food and Drug Administration has updated the product label for the cancer drug Tasigna (nilotinib) to include information for providers about how to discontinue the drug in certain patients. Tasigna, first approved by the FDA in 2007, is indicated for the treatment of patients with Philadelphia chromosome-positive (Ph+) chronic myeloid leukaemia (CML). With today’s updated dosing recommendations, patients with early (chronic) phase CML who have been taking Tasigna for three years or more, and whose leukaemia has responded to treatment according to specific criteria as detected by a test that has received FDA marketing authorization, may be eligible to stop taking Tasigna.

    “Patients diagnosed with CML generally face a lifetime of treatment to keep their leukaemia from growing or recurring,” said Richard Pazdur, M.D., director of the FDA’s Oncology Center of Excellence and acting director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “This approval shows that some patients may be able to stop treatment with Tasigna altogether if they are showing a strong response to therapy. While we welcome this progress in patient care, it’s important to note that any discontinuation of treatment still means patients must be regularly monitored for disease recurrence.”

    To read more, please visit the U.S. Food and Drug Administration website

     

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    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 

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    The TFR for CML patients survey is now live!

    The CML Advocates Network is launching the online global survey “TFR 4 CML Patients”, available in seven languages: English, Spanish, German, Italian, French, Finnish and Hebrew, to measure the viewpoints, needs and experiences of CML patients that are considering or have already started Treatment Free Remission (TFR).

    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.

    Take the TFR survey here

  • 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.

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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 

     

     

     

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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:

     

  • 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.

     

     


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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.