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.
CML Education Session at ASH 2017: Stopping treatment, cardiovascular toxicities of CML drugs, and eradicating leukemia stem cells
About 30.000 people are meeting in Atlanta (and due to snowfall that happens usually once every five years, it currently feels more like Alaska) to discuss latest science in blood diseases. The Education Sessions are a core element of the conference programme, providing a broad overview on key topics in specific diseases. In the CML education session 2017, stopping CML treatment, cardiovascular issues of current TKI treatment, and eradicating CML stem cells were chosen as the “hot topics” this year.
World CML Day 2017 activities worldwide
This World CML Day 2017 has been a really exciting celebration for Chronic Myeloid Leukemia community. 60 CML Advocates Network patient organisations members of 51 countries from all continents joined our global campaign "Today Together: Today, together we are treated.Tomorrow we need cure!", raising awareness about CML patient perspective, needs, feelings and wishes.
CML patient advocates and patient associations empowered not just the CML patients, relatives and carers but also health care providers, media, policymakers and the public in general.
The CML Advocates Network was really positively touched by hundreds of CML advocacy activities where emotions and scientific CML information shared by CML advocates led the CML conversation on media, social media, health centres and many streets and institutions.
We want to present you this World CML Day 2017 Report with most of the global activities as well as express our warmest gratitude to all participants who made last 22nd September a memorable day.
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.
