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.

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.

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.

Today, Together

... is still the motto of the 2017 World CML Day campaign but we give one step more..

Today, together we are treated. 

                            Tomorrow we need cure! 

One day, one community, one life changing reality… Today, we are together to take a stand, share our needs and raise awareness! 

This year again on World CML Day 9/22 leukemia patients worldwide are united to address the courage and hope required to live with chronic myeloid leukemia and are calling for access to best available treatment and care for all patients but also for the development of a cure for our disease.

This is our 10th World CML Day celebration and since 2015 we celebrate World CML Day 22/9 under the motto TODAY, TOGETHER! This time, we want to add the following to the main message: "Today, together we are treated. Tomorrow, we need cure!"

For more information about this year’s campaign you can watch in the video presentation: World CML Day 2017: Achievements and Outlook

The 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.

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.