€ 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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RCE-ESO-ESMO training course for rare cancer patient advocates: Travel grants available

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Are you are Patient Advocate for Rare Cancers? If so, you need to know about the Training  Course from RCE-ESO-ESMO with travel grants available.

From 01-03 December 2018, the Rare Cancers Europe (RCE) initiative, in collaboration with the European School of Oncology (ESO) and the European Society for Medical Oncology (ESMO), is organising a specific training course for Rare Cancer Patient Advocates. 

The 2018 edition of the event will bring together patient advocates from across Europe, to exchange views and ideas with clinicians and researchers, who are attending the parallel ESO-ESMO-RCE Preceptorships and Clinical Update on Rare Adult Solid Cancers. 

Patient advocate travel grants available: Deadline 11th November

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Report from the first European Hematology Community Advisory Board (Hem-CAB) on 18 June 2018 in Stockholm, Sweden

hem cab1The European hematology patient community held its first hematology community advisory board (HEM-CAB) meeting in Stockholm on 18 June 2018. The hematology patient community is a very well-connected patient community in the area of rare diseases and oncology, with 12 pan-European patient umbrella organisations, including the CML Advocates Network, that have a network of over 250 member organisations that provide information for patients and carers, engage in EU and national policy and engage in research, development and regulatory affairs.

As an immediate follow-up action from the European Hematology Association (EHA) Congress, the first Hem-CAB meeting brought together leaders from the 12 pan-European umbrella patient organisations and representatives of eight pharmaceutical companies working in hematology. The CML Advocates Network was represented by Sarunas Narbutas and Jan Geissler.

The 8-hour Hem-CAB meeting was preceded by a 3-hour training session, preparing patient advocates about the structure and purposes of the meeting. While the meeting was held under confidentiality terms from all parties to allow for an open and frank discussion, key findings and action points are summarized in this report.

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ASH 2017 in Atlanta, USA: CML patient advocates information

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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Webinar: GENERIC TKIs IN CML

The Glivec patent expires in most countries latest on 21 Dec 2016.

The CML Advocates Network has been following the situation of TKI generics closely for 3 years, and has now provided a webinar which summarizes the current status.

This webinar answers some important questions, such as:

  • What are generics, and do they differentiate from innovator products?
  • Which generics of CML Tyrosine Kinase Inhibitors exist?
  • What do we know about efficacy and safety?
  • What information on CML generics is available to patients?
  • What has the patient advocacy community done so far?
  • What can patients and patient advocacy groups do about CML generics?

More can be found on our CML Advocates Network Knowledge Base on CML Generics at http://www.cmladvocates.net/generics.

If you want access to the slides, please contact Jan Geissler at jan@cmladvocates.net.

Webstream via AuthorStream (allows to skip slides)

 

 

 

 

 

 

 

 

webinar

CML Advocates Network Newsletter 2022

Newsletter 1

Below you can find, read and download the 2022 CML Advocates Network Newsletters:

  pdf ASH 2021 CML Advocates Network Conference Report (2.84 MB)

 

 

 

World CML Day 2021

WCMLDay21 Web 120 years of life-changing CML therapies, 

but worldwide access is needed for all patients.

#AccessIsNeeded    #WCMLDay21

 

Every 22nd September, chronic myeloid leukemia patients across the globe unite on World CML Day 9/22. 

This year marks the 20th anniversary of the approval of the first targeted therapy in CML that made a life-changing prognosis for many CML patients.

However, there is still a serious lack of access to standard treatments and monitoring tools for CML patients in many countries over the world.

Access to basic medicines and diagnostic, treatment according to expert recommendations, accurate monitoring tools, effective side effects management, and right information for patients and carers remain as huge challenges for many CML patients worldwide.

Visit the World CML Day 2021 website and download the logo to start your preparation for 9/22 advocacy activities.

Read more ...

EHA-Patient Joint Symposium – EHA2021 Virtual

 

EHA-Patient Joint Symposium – EHA2021 Virtual

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Part 1: Wednesday, June 9, 13:00-16:00 CET

What are the prospects for improving affordable access in two areas of key importance to hematology – precision diagnostics and orphan medicines?

  • 13:00-14:15 CET SESSION I  Coming to haematology soon: Diagnostic regulations – Threat or opportunity for innovative diagnostics ?  
  • 14:30-15:45 CET SESSION II  Affordable access to orphan medicines [or: Fair pricing of orphan medicines] 

Part 2: Friday, June 11, 13:00-14:00 CET

Which lessons from the pandemic can help to improve research, approvals, evidence generation and clinical practice? 

  • 13:00-14:00 CET SESSION III: Lessons from COVID  

Part 3: Saturday, June 12, 10:00-12:45 CET

Routine implementation of personalized therapies requires innovative trial designs and dedicated, more flexible regulatory frameworks.

  • 10:00-11:15 AM CET SESSION IV: Personalized Medicine Trials
  • 11:30-12:45 CET SESSION V: Reducing Bureaucracy in Clinical Trials

 

EHA2021 CML Thematic Day

 

CML Thematic Day

16th June 2021 

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Guidelines Sessions.

The Guidelines Sessions are a New Session Format introduced at EHA2021. The aim is to disseminate good practices and knowledge for diagnosis and treatment of hematologic diseases based on EHA produced or endorsed guidelines.

  • Chronic Myelomonocytic Leukemias: EHA Guidelines on Diagnosis and Treatment in Adults. 9:00 AM - 9:45 AM CET, Virtual room 1.

Thematic Debates.

Thematic Debates are part of the New Session formats introduced at EHA2021. These are lively and interactive debates, where 2 or more speakers will present opposing positions followed by a discussion afterwards.

  • Clonal hematopoesis and cardiovascular disease.9:00 AM - 9:45 AM CET, Virtual room 2.
  • Pediatric hematology: Should children be treated differently than adults? 9:00 AM - 9:45 AM CET, Virtual room 3.

Live Q&A Panel Discussions on CML

  • ELN-EHA SWG for CMLLive Panel Discussion 11:00 AM - 11:45 AM CET. Virtual room 1.
  • Oral Session: Population based studies in myeloid disorders. Live Panel Discussion 1:00 PM - 1:45 PM CET. Virtual room 2.
  • Oral Session: Response, resistance and treatment-free remission in CMLLive Panel Discussion 2:00 PM - 2:45 PM CET
  • Education Session. Live Panel Discussion 4:00 PM - 4:45 PM CET, Virtual room 1.

  

 

EHA2021 CML Education Session

 

CML Education Session and others

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- CML Education Session -

Stem cells targeting in CML. On demand from 11 June 2021 09:00 AM CET.

Chair: O Hantschel (Germany)

  • CML Biology. M Deininger (United States)
  • Immune cell contexture and response. S Mustjoki (Finland)
  • Treatment-free remission in CML. FX Mahon (France)

Live Q&A Panel Discussion. 16 June 2021 4:00 PM - 4:45 PM CET, Virtual room 1.

 

- EHA2021 Satellite Simposia -

 

Unmet needs in the later line treatment of CML: understanding patient and physician perspectives. Novartis sponsored. 10 June 2021 1:30 PM - 3:00 PM CET. Virtual room 1.

 Chair: F. Lang (Germany)

  • Welcome and Introduction Segment 
  • Patient and physician perspectives: Are we meeting the goals of treatment in later lines of therapy for CML? L. Machado (Canada) Co-Speaker: F. Lang                  
  • Prioritizing the unmet needs: where do we go from here? F. Lang (Germany)              
  • Exploring novel agents in later line CML. J-V Garcia-Gutierrez (Spain)
  • Live Q&A. F. Lang (Germany). Co-Speaker: L. Machado, J-V Garcia-Gutierrez.

 

- Plenary Sessions -

Plenary Session II: 12 June 2021 3:15 PM - 3:45 PM CET

p202-3 Physiopathology of coagulopathy in hematological malignancies and in COVID-19. Dr. Marcel Levi, The Netherlands.

 

- Joint Symposia -

EHA-CSH Joint Symposium: COVID-19 in hematology 12 June 2021 10:00 AM - 11:00 AM CET. Virtual room 1.

Chairs: J Gribben (United Kingdom) & D Wu (China)

Abnormalities in thrombosis and hemostasis in patients with COVID-19. H Yu (China)

 

EHA2021 CML Poster Sessions

 

Posters Sessions

On demand from 11 June 2021, 09:00 AM CET.

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Chronic myeloid leukemia - Biology & Translational Research

 

  • EP655 (EP655) NEUTROPHIL EXTRACELLULAR TRAPS ARE INCREASED IN CHRONIC MYELOID LEUKEMIA AND ARE DIFFERENTIALLY AFFECTED BY TYROSINE KINASE INHIBITORS. Dr. Alona Telerman, Israel.
  • EP656 (EP656) PROFILES OF NK CELL SUBSETS ARE ASSOCIATED WITH SUCCESSFUL TYROSINE KINASE INHIBITOR DISCONTINUATION IN CHRONIC MYELOID LEUKEMIA AND CHANGE FOLLOWING INTERFERON TREATMENT. Dr. Hao Jiang, China.
  • EP657 (EP657) TNF-MEDIATED CML CELL SURVIVAL RESISTS TKI TREATMENT AND THIS CAN BE TARGETED BY IKK2-INHIBITION. Dr. Marlena Bütow, Germany.
  • EP658 (EP658) AGE-RELATED DNA DAMAGE RESPONSE (DDR) IN HEMATOPOIETIC STEM CELLS FROM CHRONIC MYELOID LEUKAEMIA PATIENTS WHO ATTEMPTED TKI DISCONTINUATION.. Dr. Chiara Manfroni, Italy
  • EP659 (EP659) ASSESSMENT OF LEUKEMIC STEM CELL CD26+ IN CHRONIC MYELOID LEUKEMIA PATIENTS WITH DEEP MOLECULAR RESPONSE. Dr. Raquel Bengio, Argentina.
  • EP660 (EP660) EUTOS EXPERIENCE OF STANDARDISATION OF MOLECULAR MONITORING FOR CML (2016 – 2020). USE OF SECONDARY BCR-ABL1 REFERENCE MATERIALS FOR CONVERSION FACTOR VALIDATION AND ASSESSMENT OF MR4.5 DETECTION. Dr. Helen White, United Kingdom.
  • EP661 (EP661) ANALYSIS OF MRNA AND DNA LEVEL OF ATYPICAL BCR-ABL1 TRANSCRIPTS IN CML PATIENTS OUTLINED AN ELIGIBILITY FOR TKI STOPPING. Dr. Katerina Machova Polakova, Czech Republic.
  • EP662 (EP662) ANALYSIS OF MYELOID MUTATIONS IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA AND THEIR ASSOCIATION WITH ADVERSE EVENTS AND RELAPSE AFTER DISCONTINUATION. . Dr. Adrian Segura Diaz, Spain.
  • EP663 (EP663) COMPREHENSIVE IMMUNOPROFILE OF NK CELLS FROM CML PATIENTS IN TFR REVEALS A POSSIBLE ROLE OF MEMORY-LIKE NK CELLS. Dr. Maria Belen Sanchez, Argentina.
  • EP664 (EP664) TARGETING THE LEUKEMIC STEM CELL NICHE BY PI3K INHIBITORS IN CHRONIC MYELOID LEUKEMIA TO OVERCOME LEUKEMIC STEM CELL RESISTANCE. Dr. Yüksel Filik, Austria.
  • EP665 (EP665) RARE MUTATIONS IN BCR-ABL THE KINASE DOMAIN IN CRONIC MYELOID LEUKEMIA PATIENTS. Dr. Austin Kulasekararaj, Argentina.

 

Chronic myeloid leukemia – Clinical

 

  • EP666 (EP666) NEGATIVE PROGNOSTIC IMPACT OF HIGH-RISK ADDITIONAL CYTOGENETIC ABNORMALITIES IN ADDITION TO THE ELTS IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA. Dr. Giada Ingoglia, Switzerland.
  • EP667 (EP667) TREATMENT-FREE REMISSION IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA IN CHRONIC PHASE FOLLOWING FRONTLINE NILOTINIB: RESULTS FROM JALSG N-STOP216. Prof. Dr. Naoto Takahashi, Japan.
  • EP668 (EP668) TREATMENT-FREE REMISSION IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA IN CHRONIC PHASE FOLLOWING FRONTLINE DASATINIB: RESULTS FROM JALSG D-STOP216. Dr. Yosuke Minami, Japan.
  • EP669 (EP669) COMPARISON OF THE SOKAL AND EUTOS LONG-TERM SURVIVAL SCORES IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA RECEIVING TYROSINE KINASE INHIBITORS. Dr. Xiaoshuai Zhang, China
  • EP670 (EP670) ASCIMINIB RESPONSES IN PONATINIB-PRETREATED PATIENTS WITH CHRONIC MYELOID LEUKEMIA. Dr. Alejandro Luna, Spain.
  • EP671 (EP671) OUTCOMES BEFORE AND AFTER DOSE REDUCTION IN PATIENTS WITH NEWLY DIAGNOSED CHRONIC MYELOID LEUKEMIA RECEIVING BOSUTINIB OR IMATINIB. Dr. Michael Deininger, United States.
  • EP672 (EP672) SECOND-LINE BOSUTINIB FOR PATIENTS WITH CHRONIC PHASE CHRONIC MYELOID LEUKEMIA : FINAL 10-YEAR RESULTS OF A PHASE 1/2 STUDY. Dr. Carlo Gambacorti-Passerini, Italy.
  • EP673 (EP673) TREATMENT-FREE REMISSION IN CHRONIC MYELOID LEUKEMIA PATIENTS TREATED WITH LOW-DOSE TKIS. A FEASIBLE OPTION ALSO IN THE REAL-LIFE SETTING? Dr. Alessandra Iurlo, Italy.
  • EP674 (EP674) COVID-19 IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA: DISEASE OUTCOMES AND FIRST VACCINATION DATA IN RUSSIAN FEDERATION. Dr. Ekaterina Chelysheva, Russia.
  • EP675 (EP675) ASSOCIATION OF CREATINE KINASE ELEVATION WITH CLINICAL OUTCOMES IN CHRONIC MYELOID LEUKEMIA. Dr. Aniket Bankar, Canada.
  • EP676 (EP676) FRONTLINE TREATMENT APPROACHES FOR CML IN MYELOID BLAST PHASE: A SINGLE-CENTER EXPERIENCE OVER 2 DECADES. Dr. Kapil Saxena, United States.
  • EP677 (EP677) EFFECT OF COMORBIDITIES ON PATIENT RESPONSES WITH FIRST-LINE DASATINIB VERSUS IMATINIB IN CHRONIC MYELOID LEUKEMIA IN CHRONIC PHASE: EXPLORATORY POST HOC ANALYSIS OF DASISION. Dr. Massimo Breccia, Italy.
  • EP678 (EP678) HYDROXYUREA PRE-TREATMENT IN CHRONIC MYELOID LEUKEMIA PATIENTS: MORE HARM THAN GOOD? Dr. Giada Ingoglia, Switzerland.
  • EP679 (EP679) FRENCH REAL–LIFE OBSERVATIONAL STUDY “TOPASE” EVALUATING SAFETY AND EFFICACY OF PONATINIB CONFIRMS INDUCTION OF DEEP MOLECULAR RESPONSES IN 110 RESISTANT OR INTOLERANT CML PATIENTS. Dr. Ali Turhan, France.
  • EP680 (EP680) WITHDRAWAL SYNDROME AFTER TYROSINE KINASE INHIBITORS DISCONTINUATION IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA. Dr. Anna Petrova, Russia
  • EP681 (EP681) FIRST INTERIM RESULTS OF THE RUSSIAN PROSPECTIVE STUDY OF REDUCTION AND DISCONTINUATION TREATMENT OF TKI (READIT) IN CHRONIC MYELOID LEUKEMIA PATIENTS WITH DEEP MOLECULAR RESPONSE. Dr. Margarita Gurianova, Russia.
  • EP682 (EP682) A SURVEY OF HEALTHCARE PROFESSIONALS IN THE UNITED KINGDOM TO DESCRIBE CURRENT PATHWAYS AND MANAGEMENT PRACTICES IN CHRONIC MYELOID LEUKAEMIA: THE ADAPT CML SURVEY. Dr. Adam Mead, United Kingdom.
  • EP683 (EP683) TREATMENT ADHERENCE IN CHRONIC MYELOID LEUKEMIA PATIENTS RECEIVING TYROSINE KINASE INHIBITORS. Dr. Benlazar Sidi Mohamed El Amine, Algeria.
  • EP684 (EP684) THE EFFECT OF BODY MASS INDEX ON EFFICACY AND SAFETY OF BOSUTINIB OR IMATINIB IN PATIENTS WITH NEWLY DIAGNOSED CHRONIC MYELOID LEUKEMIA. Dr. Tim H Brümmendorf, Germany.

 

Quality of life, palliative care, ethics and health economics.

 

  • EP1172 (EP1172) THE PSYCHOSOCIAL IMPACT OF HAEMATOPOIETIC STEM CELL TRANSPLANTATION ON ADULT PATIENTS WITH LYMPHOMA, LEUKAEMIA OR MYELODYSPLASTIC SYNDROMES – A LITERATURE REVIEW. Dr. Pauline Frank, Switzerland.
  • EP1175 (EP1175) QUANTIFYING PATIENT PREFERENCES FOR TYROSINE KINASE INHIBITORS IN CHRONIC MYELOID LEUKEMIA: A DISCRETE-CHOICE EXPERIMENT. Dr. Bradley Mason, United Kingdom.
  • EP1185 (EP1185) IMPACT OF THE COVID-19 PANDEMIC ON HEALTH-RELATED QUALITY OF LIFE AND ANXIETY IN PEDIATRIC HEMATOLOGY/ONCOLOGY PATIENTS: A SINGLE EGYPTIAN CENTER EXPERIENCE. Dr. Yasmine El Chazli, Egypt.
  • EP1196 (EP1196) CHRONIC MYELOID LEUKEMIA ACCESS TO TYROSINE KINASE INHIBITORS AND POLYMERASE CHAIN REACTION TESTING IN CENTRAL AND EASTERN EUROPE AND WEST ASIA REGION: A PATIENT ADVOCACY PERSPECTIVE. Dr. Jelena Čugurović, Serbia.

 

  

 

EHA2021 Scientific Working Group Sessions

 

Scientific Working Group Sessions

On demand from 11 June 2021. 09:00 AM CET

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ELN-EHA SWG for CML: Chronic myeloid leukemia. 

Chair: R Hehlmann (Germany)

  • CML and COVID-19 - What do we know in 2021? D Rea (France)
  • The new ELN recommendations for treating CML. A Hochhaus (Germany)
  • CML and BCR-ABL monitoring: The poster child for molecular monitoring of hematologic neoplasms. N Cross (United Kingdom)
  • The CML genomics/HARMONY PLUS project. S Branford (Australia) 

Live Q&A Panel Discussion. 16 June 2021 11:00 AM - 11:45 AM CET. Virtual room 1.

 

Telemedicine in vulnerable older adults with hematological malignancies in the time of COVID-19. SWG: Aging and hematology

Chair: V Goede (Germany)

  • Remote telehealth assessment and monitoring in older and vulnerable cancer patients. R Stauder (Austria)
  • Bridging hospital care closer to older adults with hematological malignancies amidst COVID-19 pandemic in Madrid: The Spanish experience. R Cordoba (Spain)
  • Outcome of older adults with hematological malignancies in Brescia: The Italian experience. G Rossi (Italy)

Live Q&A Panel Discussion. 13 June 2021 3:00 PM - 3:45 PM CET. Virtual room 2.

 

The critically ill patient during the pandemic. SWG: Infections in hematology

Chair: O Cornely (Germany)

  • Pharmacokinetic considerations of anti-infective drugs in the ICU: Drug-drug interactions, ECMO, Renal Replacement Therapy. RE Lewis (Italy)
  • Fungal superinfections complicating severe COVID-19 in the ICU. M Hoenigl (Austria)
  • ICU admission of hematological patients during the pandemic: Who to admit and what’s the prognosis?. P Koehler (Germany)
  • EPICOVIDEHA survey: COVID-19 infections in patients with hematological malignancies - Results from EHA-IDWP registry. L Pagano (Italy)

Live Q&A Panel Discussion. 13 June 2021 1:00 PM - 1:45 PM CET. Virtual room 2.

 

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