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Patient Groups Launch International Platform "CML Advocates Network" (2007)

logo_cmladvocates_106.gifBad Nauheim, 1 July 2007 · Four patient groups from the UK, Germany, Israel and Czech Republic launched the "CML Advocates Network" as an international platform for organisations supporting patients and relatives suffering from "Chronic Myeloid Leukemia" (CML). The worldwide network offers support by sharing of best practice, information and advice for CML patient advocates across the world. Innovative use of Internet technologies will further increase collaboration. The "CML Advocates Network" can be found at http://www.cmladvocates.net and is both a virtual network and internet platform for CML patient organisations. It was launched on 30 June 2007 at the "New Horizons in treating cancer" conference held in Bad Nauheim, Germany, where 80 representatives of patient organisations from 28 countries on 4 continents were brought together.

The platform was initiated by four non-profit patient organisations Leukämie-Online (Germany), CML Support (UK), Israeli CML Patients Support Organisation (Israel) and Diagnoza CML (Czech Republic). More members have already joined the network.

The four main objectives of the "CML advocates network" are:
  • To provide a worldwide web directory of CML patient groups, to allow patients to find national support groups in another country.
  • To provide a platform of communication for CML patient advocates, e.g. to share best practice on cancer patient advocacy.
  • To build an advocacy knowledge base in the form of a Wiki (like Wikipedia, but dedicated to CML patient advocacy).
  • To provide a download area where documents can be shared.

The public part of the website is accessible by all individuals who may be either CML patients, their family members or caregivers, or anyone who has an interest in, or a connection to, CML. It currently features a directory of currently 22 patient organisations worldwide. The other areas of the website are accessible to representatives of patient groups only.

The CML Advocates Network was founded and is moderated on a voluntary basis by representatives of the non-profit patient organisations Leukämie-Online e.V. (Germany), CML Support (UK), Diagnoza CML (Czech Republic) and Israeli CML patients support organisation. "We would like to help CML patient groups cooperate more closely on a global basis. Many organisations face similar challenges, but have different levels of experience and varying local conditions. The platform will help to intensify the mutual exchange of experience and enable us to learn from each other and to act jointly", said Jan Geissler, president of Leukämie-Online e.V. and Vice President of the European Cancer Patient Coalition.

An informal global network of 16 CML patient groups already exists and has already proven to be extremely effective in the sharing of information about progress in treatment, new therapies, clinical trials, and has extended our ability to support each other in cancer patient advocacy. "With the CML Advocates Network, we now have a platform on the Internet to intensify our joint work and to share our knowledge", Jan said.

The use of Wiki technology will especially help in building a knowledge database and a "toolbox" for patient group organisers. Similar to Wikipedia, it will enable every member create, change or extend content. Already today, joint work has helped create and make articles available about building a support organisation, fundraising for non-profit organisations, building strategic alliances or creating patient friendly websites.

The website was built on free software and will be maintained by patient groups on a low-cost basis which ensures our financial independence from any commercial interests.

"80 representatives of patient organisations from all over the world met at 'New Horizons 2007' to discuss topics around progress in therapies, regulation, strategic partnerships, fundraising and psycho-oncology. The launch of the CML Advocates Network has been very well received by all the participants. We are very confident that the platform will now quickly come to life", said Giora Sharf, president of the Israeli patient organisation.

Contact

CML Advocates Network
http://www.cmladvocates.net


Leukämie-Online e.V. (Germany)
http://www.leukaemie-online.de
Jan Geissler


CML Support UK
http://www.cmlsupport.org.uk/
Sandy Craine


Israeli CML Patients Support Organisation (Israel)
http://www.cml.org.il
Giora Sharf


Diagnoza CML (Czech Republic)
http://www.sdruzenidiagnozacml.cz
Jana Pelouchová


 
   
 

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