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.

AshGiora1The 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.

- Giora and Nadav, a board member of
Flute of Light at ASH 2017  -

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CML Horizons 2018 Registration Now Open - 4- 6 May 2018

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Register here - Preliminary Program - Conference feeScholarship 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

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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. 
 
 

Register Now!

 

 

 

ASH 2017 on stopping treatment: Updated data and emerging recommendations for therapy-free remission outside of clinical trials

ASH2017CML1 EUROSKI1As 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.

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CML Education Session at ASH 2017: Stopping treatment, cardiovascular toxicities of CML drugs, and eradicating leukemia stem cells

ASH2017EDU mahonpanelAbout 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.

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CML Advocates Network at Eurordis Federations Council 2017

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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.

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Treatment-free remission in chronic myeloid leukemia

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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:

 

The CML Advocates Network participating at ESH 2017

esh footerThe 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.

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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

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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.

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Welcome, Philadelphia LMC, Algeria! Now 115 patient organisations from 86 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: Philadelphia LMC based in Algeria. The CML Advocates Network now totals at 115 member organisations in 86 countries worldwide! See the list of CML groups in the Network on our world map.

 

 

EHA 2017 in Madrid, Spain: Patient Advocacy Programme

ehaNot many weeks left until the European Hematology Association's annual congress opens its doors in Madrid, Spain. We are excited to see many of you at #EHA22 2017!

Over the past months, we've been working hard with the EHA team to set up an attractive patient advocacy programme during the congress.  We have a joint booth of all European patient advocacy organisations, and once again also having a “Patient Advocacy Track” within the scientific program during the congress. Up to 50 free congress registrations were offered to patient advocates, so we hope there will be strong patient attendance!

Click on "Read more" what is offered specifically for patient advocates, hematologists and other stakeholders at EHA this year.

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Calling CML Patient Advocate Leaders to apply for the 3rd EUPATI Patient Expert Training Course

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THE EUPATI PATIENT EXPERT TRAINING COURSE IS TAILORED TO PATIENT ADVOCATES AND TURNS THEM INTO PATIENT EXPERTS IN MEDICINES RESEARCH AND DEVELOPMENT.

DEADLINE FOR APPLICATIONS IS 31 MARCH 2017

 

The EUPATI Patient Expert Training Course in Medicines Research & Development is an exciting and unique opportunity, offering patient advocates expert-level training that is specifically tailored for them. 

This 14-month tailor-made course, based on e-learning with additional two face-to-face training weeks, gives you the tools as CML patient advocate leaders to be able to contribute to be part of the research and development process and all related regulatory processes. It helps to understand all processes of pre-clinical and clinical research, drug safety, benefit/risk assessment and health technology assessment at an expert level.

IMG 0348So far, three CML advocates members have participated in the EUPATI course: Conny Borowczak, Aimo Stromberg and Sarunas Narbutas. Read about Conny's experience by clicking on "Read more", and contact them if you have questions.

We encourage European patient advocates (from the wider European region as defined by WHO) to apply before the deadline of 31st March at https://www.eupati.eu/third-cycle-apply-now/

 

 Click on read more for Testimonial.

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