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Advisory Council

Sharon F. Terry

Sharon F. Terry is President and CEO of Genetic Alliance, a large network engaging individuals, families and communities to transform health. She cofounded PXE International, in response to the diagnosis of PXE in her two children in 1994. She has published extensively on PXE and on participant engagement in biomedical research. She serves on in a participant, citizen science leadership capacity on many national and international bodies. She has won many awards. Terry is an Ashoka Fellow. With her husband Patrick, she is an avid paragliding pilot, rock climber and weekend farmer.