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The International Myeloma Foundation to Convene First Global Leaders Summit in Stockholm to Raise Disease Awareness and Increase Access to Life-Saving Treatments

Cancer Patient Advocate Leaders from 11 Countries Gather June 13th

Advocate from Turkey Says Patients Are Desperate for Mutual Support

06.05.13

North Hollywood, CA, June 6, 2013 -- The International Myeloma Foundation (IMF)  – improving the quality of life of myeloma patients while working toward prevention and a cure –will convene the first Global Leaders Summit in Stockholm, Sweden on June 13th in advance of the annual congress of the European Hematology Association (EHA).

Representatives from 11 countries will collaborate on ways to improve communication and interaction among blood cancer patient organizations around the world. Attending the inaugural summit will be representatives of patient organizations based in Canada, France, Israel, Italy, Korea, Latin America, Spain, Sweden, Turkey, the United Kingdom and the United States.

“Establishing a global coalition to advocate for blood cancer patients gives us the tools we need to more effectively raise awareness, and set and accomplish bigger goals,” says Arin Assero, Vice President of Global Advocacy for the IMF.

Asli Ortakmac, a journalist and founder of Miyelomla Yasam—a website for patients and their families in Turkey—looks forward to bringing ideas she gets from the Global Leaders Summit in Stockholm back to her country.

“Patients who suffer with myeloma and other blood diseases cannot find any social or psychological support, and fall into despair,” says Ortakmac. “Unfortunately, there are almost no patient support groups in Turkey.”

Ortakmac is working to change that. She adds, “Meeting with organizations who succeed on these issues would inspire us. Perhaps they can teach us shortcuts for setting up a successful support group and creating an effective advocacy-policy program for patients in our country.”

Patients are not always aware of the advances that have been made in cancer treatments, as the availability of new treatments is not uniform worldwide. The IMF Global Leaders Summit will provide the opportunity for patients to band together and share this kind of knowledge effectively.

Susie Novis, President and Co-Founder of the IMF, compares the Global Leaders Summit to the IMF's International Myeloma Working Group (IMWG), which brings together 160 leading myeloma researchers from around the world to collaborate on ways to improve myeloma treatment options and diagnostic systems, as well as patient quality of life.

“We think we can duplicate the successes the IMF has had bringing researchers together to improve the lives of myeloma patients by bringing patient advocates together at the Global Leaders Summit,” says Novis.

Arin Assero hopes the establishment of a Global Leaders network will strengthen the voices of cancer patients whose countries limit the treatment options available to them. “If the global community can come together to raise awareness of an issue, we’ll have accomplished the first step towards meaningful change,” she says.

Fortunately, today’s digital era makes this easier than at any time in the past. “Thanks to internet and other communication technologies, there are no boundaries among communities,” says Asli Ortakmac. “It's really important to create one global sound to broadcast our patients' needs.”

Patient organizations interested in learning more may contact Arin Assero at aassero@myeloma.org.

ABOUT THE INTERNATIONAL MYELOMA FOUNDATION

Celebrating its 22nd anniversary, the International Myeloma Foundation reaches more than 215,000 members in 113 countries worldwide. A 501 (c) 3 non-profit organization dedicated to improving the quality of life of myeloma patients and their families, the IMF focuses on four key areas: research, education, support, and advocacy. To date, the IMF has conducted more than 250 educational seminars worldwide, maintains a world-renowned hotline, and established the International Myeloma Working Group (IMWG), a collaborative research initiative focused on improving myeloma treatment options for patients. The IMF can be reached at (800) 452-CURE (2873). The global website is myeloma.org.

MEDIA CONTACT:

Debra Gendel
+1-310-710-1903
Debra.Gendel@initiatePR.com

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