We hereby proudly welcome a new member organisation in the CML Advocates Network:

How Big Data and large data sets are helping to ask and answer previously unknown questions and answers in research on hematological diseases.

Big Data – the term has been a topic of controversial debate for several years.

Why, despite all the criticism, should we gather and analyze big amounts of data? Why does it hold great potential for health research?

How does the HARMONY project launched by the EU’s Innovative Medicines Initiative make use of Big Data, and to what extent do patient organizations have a central role to play in this?

And what role does it play in CML? 

It is with regret and sadness to hear of our recent loss of our dear friend Jacek Gugulski, who passed away on the 6th of February at the age of 52 years after long time of struggling with cancer. A service is being held on Thursday, February 11th at 13:00 in Chęcinach, St. Bartholomew Church.

Jacek was the long-time President and Co-founder of our member in Poland, the Polish Nationwide Association of CML Patients and the Polish Cancer Patient Coalition.

He was a friendly and charismatic person, a very respected patient advocate. In his activities for the benefit of haematological patients, he showed great empathy and commitment. He initiated many meetings and actions promoting cancer treatment for patients throughout Poland. He engaged heavily to ensure that haematological patients in Poland had access to effective drugs and therapies.

In our Co-founder Jan Geissler words, "I have known Jacek since 2004. He was diagnosed with CML in 1991. He co-founded "Stowarzyszenie PBS" in 2004 and from that moment was very active to advocate on behalf of cancer patients on the national and international level. 

In 2004, he was at our European Cancer Patient Coalition Summit of Cancer Patients Advocacy Groups in Central and Eastern Europe held in Warsaw under the hospices of the Polish First Lady Jolanta Kwaśniewska.

In 2005, the year we decided to set up the CML Advocates Network, a number of CML patient organisations did one of their first joint advocacy activities by sending letters from all parts of the world to appeal to the Polish government to reconsider their position on putting Glivec on the list of reimbursed medicines in Poland, which, thanks to Jacek, was successful. 

He attended many European Cancer Patient Coalition meetings, as the Masterclass in 2009, and a countless number of CML Horizons conferences over the past decade. We will miss Jacek a lot!"

On behalf of the global CML patient advocacy community, we extend our heartfelt sympathy to his wife Monica, and his two sons Bartek and Cuba and also to the whole family and friends. We wish them peace to bring comfort and courage to face the difficult days ahead.

Rest in peace, dear Jacek.

The 62nd ASH Annual Meeting and Exposition organised by the American Society of Hematology was finally held virtually on December 5-8, 2020, given the coronavirus outbreak situation.

We have prepared a Conference Report in order to provide you the latest updates on the management of chronic myeloid leukemia and the most important highlights presented in this key meeting for the CML community.

Download the ASH 2020 Conference report by clicking on the image below:

The entire chronic myeloid leukemia community mourns the loss of our dear friend Ahmed Awad from Egypt.

Ahmed was a chronic myeloid leukemia patient himself for many years and founder of our member organisation in Egypt "Power of CML" in June 2014. He was a dedicated patient advocate in his country as well as a strong supporter of the global initiatives of the CML Advocates Network, as co-organizer of the World CML Day events in the Middle East and Africa region in the past years, among others.

In Ahmed owns words, "Once I got diagnosed with CML, I started getting depressed. However, I recognized how to overcome this feeling and how to help other patients to know more about the development of the latest remedy methods."

Our Steering Committee representative of the region, Bahija Gouimi, President of AMAL in Morocco, states: "I lost my best friend. He was a son for me. He was a passionate advocate, always fighting to improve the quality of drugs and patients' lives in Egypt."

We have lost a dear friend and valued dedicated colleague. Our grief and sadness at this time are little compared to what Ahmed’s family must be feeling. Our hearts and prayers go out to them.

Rest in peace, dear Ahmed.

Orphanet Journal of Rare Diseases (OJRD), which is the official journal of Orphanet, the portal for rare diseases and orphan drugs, has recently published a special supplement featuring over 50 selected poster and speaker presentation abstracts from the 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020).

This journal, published by BioMed Central, is an open access online journal focused on rare diseases and orphan products and publishes high-quality reviews on specific topics.

Our Abstract "CML Advocates Network implementation of the Community Advisory Board (CAB) model" has been included as part of this collection as P28 (page 17).

See the OJRD Supplement: 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020). Orphanet J Rare Dis 15, 310 (2020). https://doi.org/10.1186/s13023-020-01550-1

Download the PDF by clicking on the image below: