"CML Advocates Network" now connects 59 leukaemia patient groups in 48 countries

The "CML Advocates Network", an international platform for patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) now connects 59 organisations from 48 countries across all continents. This worldwide network offers support by sharing of best practice, information and advice for CML patient representatives. We are delighted to welcome our new members, AMAL from Argentina, Leukaemia CARE from the UK, AMAL from Morocco, AEAL from Spain, Henzo from Kenya, Slovenian L&L, LMC France, CML Association of Macedonia.

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. Launched in 2007 with 4 founding member groups, it has now grown to 59 connected leukaemia patient groups. "The network has strongly grown over the last two years", said Giora Sharf, Director of Israeli CML patients support and info organization.

The CML Advocates Network was initiated by four non-profit patient organisations LeukaNET/Leukämie-Online (Germany), CML Support (UK), Israeli CML Patients Support Organisation (Israel) and Diagnoza CML (Czech Republic). It is run on an entirely voluntary basis by the founding organisations and is maintained without financial support from government body or industry agency. This ensures financial independence from commercial or political interests.

The 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 communications platform for CML patient representatives, in order to share best practice in the field of cancer patient advocacy.
  • To build a knowledge base on patient advocacy.
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 detailed directory of more than 50 patient organisations worldwide. The other areas of the website are accessible to representatives of patient groups by invitation only, and are password protected.

"We would like to help CML patient groups cooperate more closely on a global level. 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 network helps us to learn from each other and to coordinate our advocacy initiatives", said Jan Geissler, chair of LeukaNET 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 Giora Sharf, chair of the Israeli CML Patients Support Organisation.

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 with substantial deficits existed.


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