|On Friday December 2nd, twenty-five members of the Global Myeloma Action Network (GMAN) and industry partners met in San Diego, California during the annual meeting of the American Society of Hematology (ASH). Members in attendance included Myeloma Canada, Myeloma Australia, MOHA, IMF Latin America and Fundación Colombiana de Leucemia y Linfoma.
Nadia Elkebir, Director, Europe, Middle East & Africa for the International Myeloma Foundation began the meeting with a welcome message and review of her activities over the last year. She included photos of the many myeloma patients she has worked with from all over the world. Robin Levy, Senior Director, Public Policy and Advocacy for the International Myeloma Foundation gave an overview of what GMAN has accomplished over the last year, including the Susie Novis Durie Educational Grant, the creation of a patient charter, a global awareness day for March 2017, patient education webinars and the successful meeting in Copehagen in June.
Engin Gul of Myeloma Canada joined the meeting to present on the Myeloma Canada Research Network (MCRN). Engin described the goal of the MCRN as to improve patient outcomes by advancing myeloma research across the country. The MCRN is the first and only myeloma research group bringing together Canada’s myeloma research leaders from across Canada. From its beginnings in 2009, it has now grown to a network of over 30 scientists, investigators and clinicians representing 16 myeloma research and treatment centres in nine provinces. The MCRN is filling a notable void in Canada — the lack of a strong and dedicated national myeloma clinical trials network.
Following Engin, Dr. Rafat Abonour of the International Myeloma Working Group (IMWG) spoke on the state of global healthcare, stating that the only way to sustain the cost for myeloma treatments was to cure myeloma. Prof. Jean-Luc Harousseau also spoke briefly on quality of life issues.
Steve Roach, Chief Executive Officer for Myeloma Australia introduced the finalized version of the International Charter for People with Myeloma, describing it as a document that sets the bar for all stakeholders. Steve went on the explain how the charter has already gone into use within his country to great effect and how it did the job of setting the expectations for everyone involved in the treatment of myeloma, including the patient.
Robin Levy followed Steve with discussion on a global database to list available treatments and patient support organizations. The concept was described as being a clickable map that, when selected, would bring up a variety of information for a patient seeking more knowledge on myeloma in their particular country or region. Robin offered the GMAN website to host such a database, and further discussion brought in the idea to include available clinical trials as well. While still in the developmental stages, a global database may be a topic of interest next year at EHA in Madrid.
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