CML Advocates Network at Eurordis Federations Council 2017
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.
ASH 2017 in Atlanta, USA: CML patient advocates information
Just 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!
Treatment-free remission in chronic myeloid leukemia
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:
1 commentsThe CML Advocates Network participating at ESH 2017
The 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.
Very engaged patient advocacy activities at the European Hematology Association’s Annual Congress 2017 in Madrid
The European Hematology Association’s (EHA) Annual Congress was held in Madrid, Spain on 22-25 June 2017. More than 10.000 hematology professionals from around the world gathered and discussed the latest developments in hematology research and clinical practice. For the last 7 years, EHA together with its EHA Patient Organisations Workgroup, have conducted Patient Advocacy Sessions within the Scientific Programme of the EHA Congress. With its Patient Advocacy Track, EHA Fellowship Programme, Capacity Building Programme for Patient Advocates, the EHA is one of the leading medical societies in terms of patient involvement in its congress.
EHA presentations available in this article.
Welcome, Power of CML, Egypt! Now 116 patient organisations from 86 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: Power of CML based in Egypt. The CML Advocates Network now totals at 116 member organisations in 86 countries worldwide! See the list of CML groups in the Network on our world map.
CML Clinical Trials Registry now lists 35 ongoing studies
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.
World CML Day 2017
Today, Together
... is still the motto of the 2017 World CML Day campaign but we give one step more..
Today, together we are treated.
Tomorrow we need cure!
One day, one community, one life changing reality… Today, we are together to take a stand, share our needs and raise awareness!
This year again on World CML Day 9/22 leukemia patients worldwide are united to address the courage and hope required to live with chronic myeloid leukemia and are calling for access to best available treatment and care for all patients but also for the development of a cure for our disease.
This is our 10th World CML Day celebration and since 2015 we celebrate World CML Day 22/9 under the motto TODAY, TOGETHER! This time, we want to add the following to the main message: "Today, together we are treated. Tomorrow, we need cure!"
For more information about this year’s campaign you can watch in the video presentation: World CML Day 2017: Achievements and Outlook
ASCO: US perspective of TKI therapy discontinuation in CML patients
The 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.
ASCO Dasatinib in pediatric CML patients report
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.
CML Horizons 2017 - Learn. Share. Grow: Presentations, Photo Gallery and Web streams now available!
CML Advocacy: Learn. Share. Grow.
26-28 May 2017, Frankfurt, Germany
During the annual CML Horizons Conference on 26 to 28 May 2017 the CML Advocates Network welcomed 100 delegates (among them 24 newcomers) supporting patients and families affected by Chronic Myeloid Leukemia (CML) to Frankfurt, Germany. Delegates from around the world (Europe, North America, Asia, Africa, Middle East and Latin America) came to Frankfurt to learn from experts both medical and patient advocates on the latest information about CML, share best practises in patient advocacy in order to grow their organisations in their own countries and give back to their own communities. We also featured a poster board where our members were able to present some of their activities that they have had during the year. In addition to this our members had the opportunity to submit abstracts and feature in our “best Practice session” on a successful activity they had on their own country. Furthermore, at this year's conference a new CML Horizons Steering Committee was elected.
CML Horizons is a wholly community-run and multi-sponsored conference, which has evolved from the "New Horizons" conferences 2002-2011. The annual conference is run by the CML Advocates Network, hosted by the non-profit, swiss-based and patient-driven "Leukemia Patient Advocates Foundation".
Presentations, Photo Gallery and Videostreams are available now!
Click on "PDF" to see all presentations. If you wish to translate selected presentation, please contact Celia Marín at celia@lepaf.org and ask for the PowerPoint-file! This will make it easier for you to translate the presentation to the language of your choice.
Please note that the speakers have authorized CML Advocates Network only to provide the PDFs on this website, but it is not allowed to upload the PDFs somewhere else! So if you want to share the slides, please do this by linking to this page or the files on this site!
To stream individual sessions, click on "Webstream" below.
To check out the CML Horizons 2017 Photo Gallery, click HERE
ASCO CML Education Session 2017
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.
