Neil Formstone

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The Wales Cancer Bank aims to establish a collection of tissue and blood samples from cancer patients in Wales to help identify novel biomarkers for cancer prediction, prognosis, and personalized treatment. It has consented over 3,190 patients from 7 hospitals since 2005. Patients have been actively involved as advisors, donors, and advocates. They provide a unique perspective and want to help advance cancer research that could benefit future patients. The biobank must responsibly use samples for high-quality reproducible research to further knowledge and develop new treatments.

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THE WALES CANCER BANK – PATIENT INVOLVEMENT Neil Formstone

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The Canadian Cancer Survivor Network (CCSN) conducted a survey in April 2013 the discover the impact that being involved in volunteer advocacy and/or the development of public policy has on cancer patients, survivors, caregivers and family members. 51 people completed the survey. Findings were that patient advocacy generally has a positive impact on the self-image of those doing it, that many volunteer advocates felt better, prouder, more useful, more hopeful, more effective and more powerful. Still others felt less angry, less anxious, and less sad. But some survey respondents did feel sadder, angrier, less hopeful and less content. CCSN recommends that organizations ensure that cancer patients involved in advocacy activities receive skills to help them and support to deal with the often slow-moving and sometimes frustrating healthcare, cancer care and government systems in Canada.

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Please share this webinar with anyone who may be interested! Watch all our webinars: https://www.youtube.com/playlist?list=PL4dDQscmFYu_ezxuxnAE61hx4JlqAKXpR Webinar Information: The cancer survivor community knows the statistics about cancer all too well: that nearly half of all Canadians will develop cancer over the course of their lives, and that a quarter of them are forecasted to die from the disease. There are dozens of less prevalent cancer types that face significant and different challenges in terms of organization, research and support. The prognosis for many rare cancers is improving as new treatments are developed, however, in Canada, getting access to new therapies and clinical trials is one of many challenges faced by small communities often struggling with the disease and dealing with life’s myriad other challenges. This webinar will explore what individual caregivers can do, how groups can work together to pool resources and share best practices and information, and provide concrete recommendations for the broader cancer community in Canada. You will learn more about how patients are working with each other, and with the clinical and research community and health systems, to improve the lives of Canadians affected by rare cancers! Presenters: • David Josephy, President of GIST Sarcoma Life Raft Group Canada • Martine Elias, Director of Access, Advocacy & Community Relations with Myeloma Canada • Durhane Wong-Rieger, President & CEO of the Canadian Organization for Rare Disorders (CORD) • Bill Dempster, 3Sixty Public Affairs View the video: https://youtu.be/L3mqpu-iFU0 Follow our social media accounts: Twitter - https://twitter.com/survivornetca Facebook - https://www.facebook.com/CanadianSurvivorNet Pinterest - https://www.pinterest.com/survivornetwork YouTube - https://www.youtube.com/user/Survivornetca

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