CML Advocates Network with the Rare Disease Day 2018
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.
CML Advocates Network participating at EHA-SWG 2018 Meeting
The 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.
During 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.
ASH 2017- personal report, impressions and summary
- 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.
The 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.
CML Horizons 2018 Registration Now Open - 4- 6 May 2018
Register here - Preliminary Program - Conference fee - Scholarship Application
- Call for Poster Presentation Abstracts - Travel - Visas - Venue & Accommodation - Acknowledgements
Registration is now open - Join us for the 16th “CML Horizons: Learn. Share. Grow" Conference
DATE: 4TH to 6th MAY 2018
LOCATION: WARSAW, POLAND
Equip yourself with knowledge on how to make a difference to the lives of patients, identify opportunities in patient support & advocacy, empower yourself & gain the courage to fight for the rights of CML patients, learn from the experts - both patient advocates and physicians.
This exciting one of its kind conference will enable you to be able to exchange ideas, interact & share best practice. You will also have the opportunity start networking across borders and build alliances and so much more for you to bring back to your own organization.
Sincere condolences to Kazakhstan CML community
Our hearts go out to Kazakhstan and members of the Association of Patients with Hemoblastoses and especially to the family of Lyubov Mizinova who has passed away this month.
We have lost a dear friend and valued patient advocate.
Lyubov Mizinova was the President of the long-running organisation in Kazakhstan and our member for many years.
She was a commendable CML advocate who was active in both Kazakhstan and part of the CML Advocates Network many years.
We all are very proud of every single CML patient advocate who dedicates time, resources, skills and love to the CML community worldwide.
We will all miss Lyubov very much and her loss will be felt by the CML community.
Our thoughts and prayers are with Mrs Mizinova's family at this time.
ASH 2017 on stopping treatment: Updated data and emerging recommendations for therapy-free remission outside of clinical trials
As in previous years, stopping TKI treatment was a widely discussed topic at this year's ASH meeting. New data on trials like EURO-SKI, DASFREE and others are underlining the findings of previous trials and are increasing the certainty on the safety of stopping treatment in a very controlled, closely monitored clinical setting. There is still uncertainty about factors that might predict whether a patient can successfully stop treatment or will experience a recurrence of the disease leading to re-starting therapy. There is still no clarity about the underlying biological mechanisms why some patients can stop successfully while others can't.
Ongoing trials like EURO-SKI will provide a lot of answers, but because there is a lot of demand for stopping treatment while there is only a small number of trials that are still recruiting, stopping treatment is happening a lot "out there in the field". As demonstrated by data presented data at the ASCO conference in June 2017, this may lead also to bad clinical practice when the requirements and potential risks are not taken serious. To provide more certainty on the requirements, first official clinical recommendations are emerging, but they are based on early data. We've tried to summarize what we heard and learned at ASH and what current recommendations say.
