Patient groups representing rare cancers like leukaemia greatly benefit from sharing knowledge as well as collaborating with other groups and the oncology community. The CML Advocates Network, founded in 2007, is both a virtual network and an internet platform, now connecting 90 leukemia patient groups from 68 countries.
The main objectives of the "CML Advocates Network" are:
The network is solely run by patient groups, and is maintained without any government or industry support. This ensures its financial independence from commercial or political interests.
"We would like to help CML patient groups cooperate more closely on a global level. Our goal is to support leukemia patients to help each other across borders as well as to access news from research, trials and clinical care. Many patient 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, to share information and best practice", said Jan Geissler, chair of Leukämie-Online e.V.
"The CML Advocates Network has been very well received by CML groups worldwide, which underlines our core rationale of alliance building as the single most important component of effective patient advocacy on the ground", said Sandy Craine, Director of The CML Support Group (UK). The informal global network patient groups has already proven to be very effective in sharing information about progress in treatment, clinical trials, and built capacity in cancer patient advocacy. 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 network has run joint campaigns to improve patient access to adequate treatment in countries where substantial deficits existed.
"We very much welcome the launch of the International Chronic Myeloid Leukemia Foundation, and hope to collaborate closely to improve the outcomes for patients with CML globally", said Jan Geissler. "There is a huge potential if patient groups, researchers and clinical centers work closely together to provide the best possible information and care to patients. We warmly wish the iCMLf a successful start!"
CML Advocates Network