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.
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.
