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.
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.
Today is World CML Day 2019. Play and Learn, Share, Grow with us!
On the World CML Day 2019, the CML Advocates Network is launching an online QUIZ aimed at educating patients, their relatives and society in general about chronic myeloid leukemia as well as at increasing awareness about this disease.
Click on The 9/22 Quiz, start playing and share your score on social media to join the World CML Day awareness campaign!
World CML Day 2019 events are starting worldwide!
Today, together, for a CML free world...
... is the motto for this year´s World CML Day campaign, which will take place in two days, Sunday, Sept 22!
The World CML Day 2019 campaign: "Today, together, for a CML free world."
In order to help you spread the message of awareness and strengthen your voice, the CML Advocates Network has developed World CML Day 2019 materials to make this day global and unique.
Feel free to download, adapt and share the posters, flyers, images and videos on your face to face meetings, websites and social media channels. Let's go to raise awareness on Chronic Myeloid Leukemia all together!
World CML Day 2019
2019
World CML Day
"Today, together,
for a CML free world."
Every year in 22nd September the CML global community lead by the CML patient Advocates holds the World CML Day. 9/22 represents the genetic change of Chromosomes 9 and 22 that is the cause of Chronic Myeloid Leukemia (CML).
Since 2011, the worldwide community unites to celebrate "World CML Day" on September 22 (9/22). This date has been chosen for global and local CML awareness activities adding symbolic significance to the events, projects and campaigns.
CML patient advocates are together focused on raising awareness of the needs of patients living with Chronic Myeloid Leukemia.
Know more about what we are planning for the World CML Day 2019 and be ready to be part of the worldwide awareness with "Today, together. For a CML free world."
Family Meeting of the German Parents' Organisation for Children with CML
From 31.05.-02.06.2019 the members of the Parents' Organisation for Children with CML e.V. met in Dortmund, Germany. 20 families followed the invitation of the first chairman Ullrich Duckstein and his wife. For many of them, it was a reunion but for 3 families it was the first personal contact with other affected parents after CML diagnosis of their child.
Our dear Cornelia Borowczak, a very active member of this organization, mother of a CML patient as well as a member of our CML Community Advisory Board has shared with the global CML community the following information about CML and children. Don't miss these interesting updates on "Pediatric Chronic Myeloid Leukemia":
CML Horizons 2019 - Presentations, photo gallery and videos now available!
CML Advocacy: Learn. Share. Grow.
17 - 19 May 2019, Lisbon, Portugal
The 17th International CML Horizons Conference was held in Lisbon, Portugal from the 17th to 19th May 2019
This year we greeted a record 119 participants and welcomed 22 newcomers who all support the CML Community worldwide with a very active engagement in Social Media by sharing, making comments and networking in Facebook, Twitter and Instagram during the meeting.
Hundreds of posts on the Facebook Pages of the CML patient advocates and groups were informing thousands of people worldwide and more than 300 Tweets using the hashtag #CMLHZ19 got a large impact on the online CML community with more than 11.000 impressions on this social media channel.
Our participants were given the opportunity to hear from 21 speakers from both medical and patient advocate specialists.
In addition to the expert presentations from our acclaimed speakers our participants once again through the interactive regional workshops collectively played a role in strengthening the regions.
The conference also offers cross border networking where delegates were able to share best practices, interact and exchange ideas.
The poster session has become extremely popular and 21 advocates showcased their organisations' activities.
Read more to access to the Presentations, Video Streams and Photo Gallery of the CML Horizons 2019 Conference.