The "CML Advocates Network", the international platform of patient groups supporting patients and relatives suffering from Chronic Myeloid Leukaemia, and the International CML Foundation join forces to support young patients affected by that rare form of leukaemia, as well as physicians and researchers. The project, launched on International Childhood Cancer Day on 15 February 2011, will encompass a range of activities to support collaboration and sharing of experience of parents of young patients as well as physicians treating children with this ultra-rare condition.
The newly launched "Junior CML" website on the CML Advocates Network, available at http://junior.cmladvocates.net, intends to support patient representatives, parents and adolescents. At launchtime, it provides a comprehensive overview of scientific publications in paediatric CML, testimonials from parents and young CML patients, links to patient organisations supporting specifically these patients, and a newsletter subscription. Similar information will be reflected on the website of the International CML Foundation (iCMLf) at http://cml-foundation.org/pediatric to support those physicians treating children or adolescents with CML with information and networking.
"We perceive a great need for coordination and communications between those paediatric oncologists and haematologists that treat children and adolescents with CML. At the same time, patients and parents feel there is a lot of uncertainty how young CML patients can be treated and managed in the best way. Joining forces between the International CML Foundation, connecting physicians, and the CML Advocates Network, connecting patient advocates, is just a perfect match", says Jan Geissler who is both a CML patient, a co-founder of the CML Advocates Network and the project manager at the International CML Foundation.
"Five years ago, my youngest son just turned 9 years old when he was diagnosed with CML. Fortunately, he had the opportunity to access good treatment and care. Today he is back with strength and enthusiasm, being able to live a normal life. However uncertainty remains", says Rod Padua, President of the patient organisation "Touched By Max Philippines" and project leader on behalf of the CML Advocates Network. "We are grateful the international community is now collaborating to improve care of this very rare childhood leukaemia", he adds.
"As the coordinator of a number of clinical trials in paediatric CML, I know well how important it is to share best practice between those that treat young patients with CML. I am very supportive of this initiative and wish both organisations great success", says Prof. Meinolf Suttorp, Division of Paediatric Haematology and Oncology, Department of Paediatrics, University Hospital Carl Gustav Carus, Dresden, Germany.
"We are committed to supporting networking between physicians treating young CML patients and clinicians running paediatric trials. By hosting teleconferences and providing a web resource with scientific information as well as communication tools, we can encourage collaboration and best practice sharing by paediatricians and haematologists treating young CML patients", says Prof. John Goldman, chairman of the Board of Directors of the International CML Foundation. "CML in children is very rare, but that makes collaboration across national borders all the more important", he adds.
On 15th February each year, organisations from across the globe are participating in International Childhood Cancer Day, to raise awareness of the challenges of children living with cancer and the imbalances that exist between the quality of care provided to children with cancer in the developed world as compared to the developing world. As Pat Garcia-Gonzalez of The Max Foundation shares, "At the time when Max had CML, there were there was no Internet, no contact with other people with CML, no disease information other that provided by the physician. It is my hope that the Junior CML Advocates will be a platform to bring families together who are facing cancer, where we can offer our support, honour their courage, and learn from each other."
Chronic myeloid leukaemia (CML) is a cancer affecting blood stem cells. It is a form of leukaemia characterized by the increased and unregulated growth of myeloid cells in the bone marrow and the accumulation of these cells in the blood. It is associated with a characteristic chromosomal translocation called the Philadelphia chromosome.
In general, acute leukaemias are most prevalent in children and are therefore often referred to as "childhood leukaemias". The chronic forms of leukaemias, including CML, are seen almost solely in adults. CML in children is considered an ultra-rare condition. Incidence is unknown but estimations range around less than 100 new cases per year in the USA. It accounts for less than 3% of all childhood leukaemias and less than 10% of all CML cases.
Long-term survival of paediatric patients with CML receiving hematopoietic stem cell transplantation has been reported between 60-75%, but is associated with significant morbidity. With the advent of new targeted therapies, stem cell transplant has been suggested to become a 2nd line strategy also in the paediatric setting. However, as CML is very rare in children and young adults, most data on these new therapies is derived from adult studies. Specific issues in children and adolescents with CML include the uncertainty about long-term effects of TKI therapy, challenges of adherence to therapy, fertility and family planning issues as well as psycho-oncology.
The iCMLf is a charitable foundation established in 2009 by a group of haematologists with a strong interest in Chronic Myeloid Leukaemia (CML). The mission of the iCMLf is to improve the outcomes for patients with CML globally. It aims to foster and coordinate global clinical and research collaborations and to improve clinical practice and disease monitoring in CML. Scientific advisors and national representatives spanning over 30 countries provide guidance and advice to further the aims of the iCMLf.
The CML Advocates Network is both a virtual network and internet platform for patient organisations supporting patients and relatives affected by Chronic Myeloid Leukaemia (CML). Launched in 2007 with 4 founding member groups, it has now grown to 54 leukaemia patient groups in 45 countries, offering support by sharing of best practice, information and advice for CML patient representatives.
Source: CML advocates
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