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International CML Community promotes global unity and local action through World CML Day celebrations taking place on 22 September 2013

WCMLD 2013 0922Group by group, advocate by advocate, and survivor by survivor, World CML Day is raising awareness about the needs of people living with CML around the world through numerous simultaneous events being organized by leukemia patient associations on all continents on 22nd of September.

Members of the CML Advocates Network, which is comprised of 79 patient advocacy groups in 63 countries, are honoring World CML Day on September 22nd 2013 through actionable events taking place in their communities. Events aim to underscore the importance of the needs of people living with chronic myeloid leukemia (CML), such as the significance of local and global health policies around access to treatment, care and support for people affected by cancer.

World CML Day is honored on September 22nd because 9/22 represents the genetic change of Chromosomes 9 and 22 that is the cause of CML. Therefore, the date of 9/22 adds symbolic significance to the campaigns. Since 2008, patient organizations around the world have initiated events and projects on "CML Awareness Day" on September 22 to raise awareness of the needs of patients living with CML. Since 2011, the worldwide community unites to celebrate "World CML Day" on that date.

"All united, all unique!" is the theme that brings the groups together. It is a reminder of how each person and each group experiencing a rare cancer will have their own journey. As Jan Geissler, CML patient and co-founder of the CML Advocates Network shares, “Since the first meeting of a handful of XX groups back in 2003, it is impressive to see the growth in intensity of activity in the CML patient community. Today 79 groups are members of the worldwide network. We are not only meeting once in a year at our CML Horizons conference - we are supporting each other across borders, and are jointly collaborating with all stakeholders, throughout the year. Working together is the key to improving support and care for CML patients in all regions”. Erin Schwartz, Vice President of Strategic Partnerships and Global Advocacy at The MAX Foundation and co-chair of the XX Advocates Network’s World XX Day workgroup adds “Together, we are able to share lessons learned, help each other to advocate for policy changes, and to create a louder collective voice with which to make our needs known to the world. World XX Day demonstrates the power and unity of the community.”

How can I engage in World CML Day?

No matter if you are a patient organization, a research group, or are caring for CML patients - if you or your organization is interested in joining the World CML Day campaign, here are some examples of ways to get involved:

To learn more about how World CML Day is being honored around the world, visit the CML Advocates Network website at http://www.cmladvocates.net/worldcmlday/worldcmlday2013.

Thanks to all the groups around the world participating in World CML Day, together we are “All united, all unique”!

About the CML Advocates Network

The CML Advocates Network is a patient-run network and platform for patient organizations supporting patients and relatives affected by Chronic Myeloid Leukemia (CML). Launched in 2007 with four founding member groups, it has now grown to a network of 79 leukemia patient groups in 63 countries, offering support to patient leaders by sharing of best practice, information and advice for CML patient leaders. Individual patient support as well as country-specific policy work is being covered by its member organizations on the country level. The CML Advocates Network is hosted by the non-profit Leukemia Patient Advocates Foundation in Bern, Switzerland.

Members of the CML Advocates Network

See the list of all 79 member organisations here: http://www.cmladvocates.net/cml-groups-list

About CML

Chronic Myeloid Leukemia (CML) is a rare cancer affecting blood cells. It is characterized by a genetic disorder in chromosomes 9 and 22, which leads to an unregulated growth of white blood cells. Most cases of CML occur in adults, but very rarely it occurs in children, too. Just about 15 years ago, CML was a lethal disease for the majority of patients. Nowadays, if patients are treated effectively with recommended treatments, they can have a life expectancy similar to that of the general population.

Contact

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

Nicole Schröter, Network Manager


 
   
 

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