Family Meeting of the German Parents' Organisation for Children with CML
From 31.05.-02.06.2019 the members of the Parents' Organisation for Children with CML e.V. met in Dortmund, Germany. 20 families followed the invitation of the first chairman Ullrich Duckstein and his wife. For many of them, it was a reunion but for 3 families it was the first personal contact with other affected parents after CML diagnosis of their child.
Our dear Cornelia Borowczak, a very active member of this organization, mother of a CML patient as well as a member of our CML Community Advisory Board has shared with the global CML community the following information about CML and children. Don't miss these interesting updates on "Pediatric Chronic Myeloid Leukemia":
Presentations in pediatric CML on iCMLf
News about CML is provided regularely on the website of the International Chronic Myeloid Leukemia Foundation (iCMLf). iCMLf is for everybody with an interest in CML. New presentations conducted by pediatric CML experts can be found here:
https://www.cml-foundation.org/index.php/science-education/virtual-education/612-vep-13
Pediatric CML Guidelines published
The pediatric CML steering committee of the international BFM group (I-BFM) has recently published the guidelines for treatment and management of pediatric CML in the British Journal of Haematology. The authors are pediatric experts from from United Kingdom, France, Italy, Netherlands, Belgium, and Germany. These guidelines will contribute to harmonisation of treatment of children and adolescents with CML. See our "Junior CML Advocates" section on cmladvocates, specifically the section "Scientific Publications" where the full text is available for download. Alternatively, you can access the full article by clicking here.
New poster: Online Survey on pediatric CML
In preparation for the medical session on pediatric CML at the annual conference CML Horizons 2015, in March 2015 the CML Advocates Network carried out an online survey among its member organizations. The main objectives of this patient-driven project were:
- to find out what relevance “CML in children” has for worldwide CML patient organizations
- to learn how many patient organizations support children or young adults with CML
- to learn how many children and young adults suffering from CML the respective organizations support and which age groups patients belong to
- to find out if any specific events and activities are carried out for children or young adults with CML and – if this is the case - which kind of specific activities on pediatric CML the organizations carry out and how often
- to find out which the major concerns and unanswered questions are to CML patient organizations with regard to pediatric CML
The results of the survey were made available in form of a poster. The authors of the poster were: J. GEISSLER (CML Advocates Network/LeukaNET e.v., Riemerling, Germany), C. BOROWCZAK (Elternverein für Kinder mit CML e.V., Schwerte, Germany), N. SCHRÖTER (CML Advocates Network/LeukaNET e.v., Riemerling, Germany). Click here to see the full poster!
Medical session dedicated to paediatric CML at CML Horizons 2015
The CML Advocates Network has decided to devote greater attention to CML in children. At its annual conference “CML Horizons 2015” that was held in Barcelona from 1-3 May 2015, a full medical session was dedicated to pediatric CML. Prof. Frederic Millot, a pediatric CML expert from France, spoke about “Managing CML in children and young adults”. His presentation was followed by a panel discussion entitled “What is different for adolescent patients with CML?” You can now download Prof. Millot´s presentation here. Video web streams of the session will be available soon!