Barbara Wedehase Received New 2016 Patient Advocate Leader (PAL) Award
WORLDSymposium and Lysosomal Disease Network gave thanks to someone very special who has contributed directly to lives of countless individuals dealing personally with a lysosomal disease. With a new award for Patient Advocate Leaders, the Network recognized Barbara Wedehase. Barbara Wedehase has been the Executive Director of the National MPS Society for 15 years and has overseen the tremendous growth of the Society and its programs, including over $6.5 million in research funds awarded. She has a Masters in Social Work from Washington University in St. Louis, Missouri and is a Board Certified Genetic Counselor. She was a Clinical Assistant Professor of Pediatrics in the Division of Genetics and Metabolism at the University of North Carolina prior to her work with the National MPS Society. On a national level, Ms. Wedehase served on the Steering and Executive Committees of the Lysosomal Disease Network and has been the energizing, founding leader of the Lysosomal Disease Network’s Council of Patient Advocacy (COPA) groups. She participated in an expert working group for a lysosomal disease educational initiative; served on the MPS I Technical Expert Panel for admission of MPS I to the newborn screening panel; and helped to establish the LSD Research Consortium and the awareness program, Join the Search for Patients with MPS. Internationally, Ms. Wedehase served on the Program Committees of the International MPS Societies Network and the International MPS Symposiums; was a member of the Ethics Advisory Group for the MPS VI gene therapy clinical trial.