Very engaged patient advocacy activities at the European Hematology Association’s Annual Congress 2017 in Madrid

EHA MadridThe 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.

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ASCO: US perspective of TKI therapy discontinuation in CML patients

ASCO17 tki discontinuation posterThe 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.

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ASCO Dasatinib in pediatric CML patients report

Asco CML pediatric 1

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. 

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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.




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Free EHA congress registrations for representatives of haematology patient organizations: Deadline 29 April 2017!


This year EHA Congress will be held on the  22-25 June 2017 in Madrid, Spain. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is once again offering a “Patient Advocacy Track” within the scientific program.


Once again in 2017, EHA will provide 50 Fellowships for their EHA congress which will be held during the 22-25 June 2017 in Madrid. The Fellowship provides free access to the full congress, but also includes a compulsory "capacity building programme" to educate all attending advocates and further their development and knowledge about haematology and science.  


In collaboration with EHA and the European Reference Network EuroBloodNet, we're taking the next level this year and will provide a "EHA Capacity Building Meeting" for all Fellows on 22 June, from 14:00 - 17:00.

In this meeting, EHA Fellows will hear about EuroBloodNet, the ePAGs, about interpreting scientific data, and about how to get the best out of a scientific conference EHA (for all disease areas). This will then be followed with a summary of the most important data presented at EHA, specifically for Fellows in MDS, Myeloma, Acute Leukemias, Lymphomas & CLL, MDS and CML. The capacity building meeting on 22 June will be mandatory for all EHA Fellows. Priority will be given to advocates who have attended last year's capacity building event and/or are engaged in European hematology patient networks. 

Please encourage your most important science-interested advocates to apply for an EHA Fellowship to attend EHA and speak to your umbrella group if they may be able to support EHA Fellows with travel costs.  

The CML Advocates Network can provide a limited amount of travel grant of up to 500 EUR to those European CML Advocates that receive a fellowship.

To apply for an EHA Fellowship, please ask your advocates to register HERE

Deadline for applications is 29 April 2017, accepted advocates will be informed in the first week of May. 

If you have any questions, please touch base with  

We are looking forward to meeting all the haematology advocates in Madrid!



Our publication in Journal of Cancer Research and Clinical Oncology: Factors influencing adherence in CML and ways to improvement

paperadherence2Non-Adherence to treatment in chronic diseases is  a  well-known problem. The dramatic evolution in CML  treatment  in  the  last  decade, resulting  from  the  introduction  of Imatinib  and  followed  by  second  generation TKIs,  has  turned  CML  into  a  kind  of  chronic  disease where patients need to take their medication on daily basis.

In  2012, the  CML  Advocates  Network decided   to   conduct   a   large, scientifically sound international study on adherence. It enrolled patients from 9/2012 to 1/2013 based on  a  comprehensive  questionnaire  in  12  languages.  The  aim  of  this  study  was  to  investigate motivations  and  behavioral  patterns  of  adherence  in  CML and  subsequently  support  hematologists and   patients   to   improve   adherence   and   develop   suitable   adherence   tools.   Overall   2.546 questionnaires filled in by CML patients from 63 countries and 79 CML patient organisations were returned.

Our publication “Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries” has been a tough ride for us non-scientists over the past three years, given we needed support to do the data analysis and write a scientific paper.

Our paper has now been published in the Journal of Cancer Research and Clinical Oncology

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