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Download Mobilizing MS Patient Groups to Speed FTY720 Clinical Trial
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The Role and Objectives of Patient Organizations Around the World A presentation by: Mark Krueger, MPH 27 March 2010 We are all cancer survivors • New words are being used to describe what once were cancer “victims”: • “Cancer survivors” • Advocates say a cancer patient is a “cancer survivor” from diagnosis for the rest of life • All of us affected by cancer in one way or another patients, friends, family, health professionals - are “cancer survivors” Cancer survivorship movement • “Empowering” the cancer survivor • The advocacy skill set • Cancer-related advocacy Elizabeth Clark, PhD Nancy Stovall The informed and engaged patient The roles of cancer patient groups Support Education Advocacy Research What cancer groups are doing • Nationwide cancer support and advocacy organization • “Dress Down Day” for myeloma awareness and fund raising • “Mile for Myeloma” and “Run or Walk for Myeloma UK” public awareness events • US chapter-based research and advocacy group for all hematologic cancers • New free booklet “Understanding Drug Therapy and Managing Side Effects” • Network of multiple myeloma patient groups in Europe • Support, education and advocacy • Connected to policy makers Polish leadership is evident Polish Myeloma Patient Help Association: Setting High Standards Association governance Growing membership IV Congress Cooperation between board and staff Advocacy Connections to scientists and researchers Meeting the challenges of the future Potential future projects • Use social media (FaceBook, Twitter, etc.) for education • Use Skype to connect with other chapters and groups • Translate existing materials from other organizations (i.e. The Leukemia & Lymphoma Society, etc.) • Create cancer patient blogs for leukemia, lymphoma and myeloma • Begin annual “March for Research” event Changing external environment Pressures are increasing and affect what cancer groups can and must do: • Increasing number of patients from better screening • Growing use of health technology assessment (HTA) • Decreasing budgets for cancer care and research • Increasing barriers to access to treatment Choices must be made - cancer groups must speak up Patients are at the Heart of the Global Movement You are empowering Thank you.
