Mark Skinner, Washington, DC, is President/CEO of the Institute for Policy Advancement Ltd, specializing in patient-centered outcomes research. He is an Assistant Professor in the Department of Health Research Methods, Evidence and Impact at McMaster University and the principal investigator for the Patient Reported Outcomes Burdens and Experiences (PROBE) global research study. He has previously led both the World Federation of Hemophilia and National Hemophilia Foundation, where he currently serves on the Medical and Scientific Advisory Council. His serves on the board of the Institute for Clinical and Economic Review (ICER), the National Organization for Rare Disorders (NORD) and formerly the Patient Centered Outcomes Research Institute (PCORI) Advisory Panel on Rare Disease, where he was an inaugural member. He holds degrees in Public and Business Administration from Kansas State University and JD from Washburn University School of Law. Mark lives with severe hemophilia A.