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  Issue 6, March
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"CML Advocates Network" joins forces of leukaemia advocacy groups worldwide

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Patient groups representing rare cancers like leukaemia greatly benefit from sharing knowledge and collaborating across borders. The CML Advocates Network, founded in 2007, is both a virtual network and an internet platform connecting 34 leukaemia patient groups from 28 countries.

The main objectives of the "CML Advocates Network" are:

  • To provide a public web directory of CML patient groups worldwide, to allow patients to find national support groups in another country.
  • To provide a platform for communication, education and knowledge sharing between CML patient advocatesTo coordinate joint activities and advocacy work.
  • To coordinate joint activities and advocacy work.

The network is solely run by patient groups on a low-cost basis, and is maintained without government or industry support. This ensures its financial independence from commercial or political interests.

At a worldwide meeting of CML Groups in June 2008, more than 50 delegates from organisations representing patients with chronic myeloid leukaemia (CML) signed the "Baveno CML Declaration". The declaration calls for improved access to cancer treatment, better adherence to internationally agreed treatment recommendations for CML, and equal access to up to date treatment from multidisciplinary teams in all countries. In 2005 and 2006 the global CML community proved its effectiveness by a successful letter writing campaign which called upon politicians in Poland and Hungary to improve patient access to leukaemia treatments approved in the EU.

"Our goal is to help leukaemia patient groups work together across borders. Many organisations face similar challenges, but have different levels of experience and varying national and local health care systems. The network helps us to learn from each other and to coordinate our advocacy initiatives", said Jan Geissler, president of Leukämie-Online and director of the European Cancer Patient Coalition (ECPC). "The CML Advocates Network has been very well received by CML groups worldwide", said Sandy Craine, founder and trustee of The CML Support Group UK and secretary of ECPC.

In November 2008, representatives of CML patient groups and specialist oncology nurses attended a meeting in Zürich to discuss issues around improving patient compliance with cancer therapy. "In many countries nurses have a key role in providing expert care and information to leukaemia patients. We are delighted to discuss with EBMT ways in which nurses and patient advocacy groups might work together more effectively in order to improve the treatment and care of leukaemia patients" Jan added.

Jana Pelouchova, director of the Czech CML patient group "Diagnoza CML", stressed the importance of specialist support nurses in directing patients to their local and national patient support groups. "We can improve the outcome of therapy by working together. This can improve levels of understanding of both the disease and therapy. This will inevitably improve both compliance and consequently treatment outcomes" she said.

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Contact:

CML Advocates Network
www.cmladvocates.net
info@cmladvocates.net

Leukämie-Online e.V. (Germany)
www.leukaemie-online.de
Jan Geissler
jan@leukaemie-online.de
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CML Support UK
www.cmlsupport.org.uk
Sandy Craine
info@cmlsupport.org.uk
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Israeli CML Patients Support Organisation (Israel)
www.cml.org.il
Giora Sharf
giora1@inter.net.il

Diagnoza CML (Czech Republic)
www.sdruzenidiagnozacml.cz
Jana Pelouchová
janapel@centrum.cz


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