OHSU Rare Disease Research Consortium Symposium 2015

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April 7, 2015, from 4-8:30 pm at OHSU in the Joseph Vey Conference Center 11th Floor, Doernbecher Children’s Hospital 700 SW Campus Drive Portland, OR 97239 General Info Registration Schedule Time Presenter Title 3:30 pm Registration 4:00-5:00 Sekar Kathiresan, M.D. Leveraging human knockouts to understand risk for and protection from disease 5:00 to 6:10 Poster session and reception 6:10 to 6:20 Mary Stenzel-Poore, Ph.D., Senior Associate Dean for Research, School of Medicine Introduction 6:20 to 6:30 Laura Hays, Ph.D., Executive Director, Fanconi Anemia Research Fund Making a difference: the David Frohnmayer advocacy formula 6:30 to 6:35 Maureen Hoatlin OHSU Rare Disease Consortium overview and objective of the symposium 6:35 to 6:45 Eric Orwoll, M.D. Osteogenesis imperfecta: a brittle bone disease with well-definedmolecular pathologies but limited clinical insights and therapies 6:45 to 6:55 David Sprio, M.D. A novel Real patient video platform that enables patients and clinicians to share rare disease phenotypes 6:55 to 7:05 Evan Shereck, M.D. Overview of the program in Pediatric Immunodeficiency Rare Disease Research Clinical Network 7:05 to 7:10 Markus Grompe, M.D. Program in Fanconi anemia 7:10 to 7:20 Cary O. Harding, M.D. Clinical Trials in inborn errrors of amino acid and fatty acid metabolism 7:20 to 7:40 David Ellison, M.D. Part 1: All about that Bass: rare gene mutations and human blood pressure variation. Part 2: How OCTRI can help rare disease research at OHSU 7:40 to 8:20 Xiaobing Quan, M.D., Ph.D Accelerating opportunities from discovery to clinic in rare disease research 8:20 to 8:25 Maureen Hoatlin Final Remarks, Action items, organizing for the future 8:25 to 8:30 iPad Giveaway