We pay tribute to our beloved friend and Steering Committee member

Ferdinand Mwangura

We are profoundly saddened at the passing of Ferdinand Mwangura, our friend and Steering Committee member. Ferdinand passed away in Kenya on 28th February 2018 at the age of 40.

Ferdinand was a young advocate and was well-loved and admired for his enduring commitment to work within CML Life Africa, a network of CML patient groups in Africa, Ferdinand was regarded as a leader, a mentor and a big brother to many.

In May of 2017, Ferdinand was voted in by his fellow patient advocates as the new steering committee member for CML Horizons representing Africa & Middle East region. He took this role on proudly and was a highly engaged member, always ready to provide advice and perspective on any issue.

He made particularly valuable contributions to the programme for 2018 CML Horizons. He also helped pioneer the network’s first global CML Community Advisory Boards, where he championed the voice and needs of CML patients from Africa. 

- Ferdinand enjoying the rain in the Kenyan South Coast -

Again this year, the European Hematology Association (EHA) is providing around 50 free congress registrations for leaders of hematology patient organisations, to give patient advocates the opportunity to attend the 23rd annual EHA congress which is taking place in Stockholm from June 14-17, 2018.

We are proud to welcome a new member organisation to the CML Advocates Network: Celebrando la Vida - Asociación de Lucha Contra la Leucemia, based in Bolivia. The CML Advocates Network now totals at 117 member organisations in 87 countries worldwide! See the list of CML groups in the Network on our world map.

Chronic Myeloid Leukemia is a Rare Disease

What is a Rare Disease? 

The actual prevalence of rare diseases can vary between populations, making it difficult to provide a precise numerical definition. In Europe and many other regions, a disease is defined as rare when it affects fewer than 1 in 2000. One rare disease may affect only a handful of patients in the European Union and another may touch as many as 245,000. In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases. Click here to check more information about Rare Diseases at Eurordis, Rare Diseases Europe.

The European Hematology Association held the “EHA-SWG Scientific Meeting on Integrated Diagnosis Strategies in Oncohematology for the Management of Cytopenias and Leukocytosis” on February 8-10, 2018 In Barcelona, Spain.

The scientific meeting covered all practical aspects of diagnosis of haematological disorders suspected when encountering leukocytosis or cytopenia, with a strong focus on morphology, pathology and flow cytometry.

During three days, the hematological experts put under the spotlight very interesting topics as the following: Pre analytical and analytical considerations; Towards integrated diagnoses: basics of morphology, flow cytometry, cytogenetics and molecular karyotype, molecular technologies; Morphology of granulo-monocytopoiesis: normal, MDS, AML and MPN; Lymphopoiesis, leukemia and lymphoproliferative disorders; New drugs / therapeutic approaches and personalized medicine or Patient’s follow up: MRD and detection of the emergence of resistances.

- 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.

The 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.