The "CML Advocates Network", the international platform of 54 patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) across all continents, has relaunched its web community and provides new social media functionalities.
The "CML Advocates Network 2.0" can be found at http://www.cmladvocates.net and is both a virtual network and internet platform for CML patient organisations. Launched in 2007 with 4 founding member groups it has now grown to 54 leukaemia patient groups in 44 countries, offering support by sharing of best practice, information and advice for CML patient representatives.
Since its initiation in 2007, the "CML Advocates Network", based on open source software and run by patients, has been a pioneer in using social media functionality to connect representatives of patient groups worldwide. In August 2010, the network received the "Cancer on Internet Award 2010", granted by the European School of Oncology (ESO) at the UICC World Cancer Congress in China. The focus of the 2010 award was on e-cancer patients, recognising cancer patient groups that have provided quality-based and easy-to-use communication platforms through the Internet. The prize has now been invested to further expand the use of social media. "We congratulate the CML Advocates Network for their innovative spirit and their dedication to support the e-patient, and welcome the next generation of the platform", says Alberto Costa, Director of the European School of Oncology.
ESO Cancer on Internet Award, UICC World Congress, China 2010
"We are proud to say that the 'CML Advocates Network' has taken another great step forward", says Giora Sharf, patient, co-founder of the CML Advocates Network and chair of the Israeli CML Patients Support Organisation. "We are not only providing a more interactive interface. Our platform now links seamlessly into e.g. Twitter and Facebook and provides blog-like comment functionality, giving advocates and patients all ways to interact with us. We're using their preferred channels", adds says Jan Geissler, patient, co-founder of the network and chair of the German LeukaNET.
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 features an interactive directory of currently 54 leukemia patient groups worldwide. The member-only area of the website, which uses interactive functionality like the Wiki and the Forum, accessible to representatives of patient groups only, in order to keep preparation of campaigns or new initiatives private.
"On behalf of the CML Advocates Network community I would like to warmly thank the European School of Oncology for the great honour of the Cancer on Internet Award" says Jana Pelouchová, patient, co-founder of the network and chair of Diagnoza CML in Czech Republic. "Our goal is to support leukaemia patients to help each other across borders. Many organisations face similar challenges, but have different levels of experience and varying national and local health care systems. The Internet and Social Media are crucial to collaborate, learn from each other and to coordinate our advocacy initiatives".
The informal global network patient groups has already proven to be very effective in the past, sharing information about progress in treatment, clinical trials, and built capacity in cancer patient advocacy. The network has run joint campaigns to improve patient access to adequate treatment in countries with substantial deficits existed.