Welcome, APPPEH, Panama! Now 123 patient organisations from 93 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: Asociación Panameña de Pacientes y Parientes con Enfermedades Hematológicas APPPEH, based in Panama.
The CML Advocates Network now totals at 123 member organisations in 93 countries worldwide!
See the list of CML groups in the Network on our world map.
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, IndiaSpeakers:
Gary H. Lyman, MD, Fred Hutchinson Cancer Research Center, Seattle, WA
- Meeting the Needs of CML Patients in Resource-Poor Countries: a Roundtable Discussion
New drugs for CML in clinical trials: ASH 2019
Results from ASH: Discontinuation of TKIs in children with CML
TKIs 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.
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.
Overall, 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.
The CML Clinical Trials data-base now lists 54 studies worldwide
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
ASH 2019 in Orlando, USA: CML patient advocates information
Just 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:
- The CML Advocates Network Paper “Chronic Myeloid Leukemia Patients’ Views on Psychological Support Throughout the Treatment-Free Remission Journey”
- 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.
TFR results and resources
Guidelines and Recommendations on Treatment-Free Remission in CML
First recommendations exist about how to manage to stop and re-start therapy, based on early data from previous studies like the French STIM studies, the largest stop study EUROSKI as well as company-sponsored studies ENESTop, ENESTfreedom and DASFREE. The ELN, NCCN (USA) and ESMO (Europe) have published first recommendations for stopping treatment outside the context of clinical trials and the institutional requirements of the centre and lab. However, there is still no wide consensus among the CML experts, prognostic factors for TFR success are not yet clear, and the emotional impact is not yet well understood by doctors and patients.
Our publication in LEUKEMIA
Our paper “Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs” has been published in the scientific journal Leukemia in 2020.
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
Our full slide deck with TFR4CML survey data
Our ESHCML2020 Abstract and Oral Presentation
TFR4CML results presented at the European School of Hematology, 22nd Annual John Goldman Conference on Chronic Myeloid Leukemia: Biology and Therapy.
Our Abstract “Chronic Myeloid Leukemia Patients’ Concerns during Phase I of the Treatment-Free Remission Journey: Communication Between Patients and Doctors in the Different CML Advocates Network Regions” was accepted to be presented by our co-founder Giora Sharf as part of the scientific session 7: #TreatmentFreeRemission - Predictive factors".
Read the full Abstract pdf ESHCML 2020 Abstract CMLAdvocatesNetwork (348 KB)
Our IACH2020 Abstract and Poster Presentation
Abstract and Poster presented at the International Academy for Clinical Hematology (IACH) 2020 Congress.
Read the Poster pdf IACH2020 Poster CMLAdvocatesNetwork (1.36 MB)
Our 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.
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:
Our ECRD 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.
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.
Our ASH 2019 Abstract
The 61st American Society of Hematology Congress 2019 had 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 on the right.
Our ASH 2019 Poster
Our Abstract has been additionally selected for Poster presentation as part of the scientific session 632 Chronic Myeloid Leukemia: Therapy: Poster II. Hematology Disease Topics & Pathways: Adult, Diseases, CML, Study Population, Myeloid Malignancies, taking place on Sunday, December 8, 2019, 6:00 PM-8:00 PM at Hall B, Level 2 (Orange County Convention Center), Orlando, USA.
To check and download the #ASH19 Poster "Chronic Myeloid Leukemia Patients’ Views on Psychological Support Throughout the Treatment-Free Remission Journey", please, click on the image below:
The authors would like to thank the 122 member organizations of the CML Advocates Network for their assistance in promoting the #TFR4CML survey and the CML patients who participated in the TFR for CML patients research.
CML Horizons 2020 Registration Now Open
Register here - Preliminary Program - Conference fee - Scholarship Application
Call for Poster - Call for Nominations Travel - Visas - Venue & Accommodation - Acknowledgements
Registration is now open - Join us for the 18th “CML Horizons: Learn. Share. Grow" Conference
DATE: 1st to 3rd MAY 2020 - LOCATION: San José, Costa Rica
For the first time, the 18th CML Horizons will be held outside of Europe and will take us to Central America in beautiful Costa Rica.
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.
This 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:
CML Advocates Network appoints Denis Costello as its first ever Executive Director.
We’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.
