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The talk will be focused on our latest initiative: to help usher in a global patient registry for FSHD via the FSHD Champions.
Following the talk, Dr. Block and June Kinoshita of the FSH Society will field questions from the community as to how the global research funding organizations can best work together to accelerate research.
Abstract: The FSHD Champions are an international alliance of organizations that fund FSHD research and advocate for patients with this disease. The alliance was formed to educate, support, and advance each organization's mandate of improving the lives of FSHD patients. The Champions are currently spearheading a number of efforts to [i] strategically leverage the knowledge and efforts of each member's programs in an international context, [ii] reduce duplication of effort, and [iii] remove global barriers to the advancement of therapies for FSHD. Champions programs include efforts to coordinate existing patient registries toward a global harmonized registry, streamline grant application processes, and establish basic research and clinical priorities. Initial traction toward these goals has identified key challenges for stakeholders, from individual labs to global consortia.