Quick Facts
Biography
Sharon F. Terry was born (November 16, 1956) in Waterbury, Connecticut. She is a health advocate in Washington, D.C. She co-founded PXE International when her children were diagnosed with pseudoxanthoma elasticum (PXE) in 1994. In 2009, she was elected an Ashoka Fellow for her entrepreneurial work in engagement and the development of interventions for genetic conditions.
Professional background
She is the current President and CEO of Genetic Alliance, and Executive Director of PXE International, a research organization for the genetic disorder pseudoxanthoma elasticum (PXE).
She is co-founder of the Genetic Alliance Registry and Biobank,. She is the chair of the Coalition for Genetic Fairness that advocated for the passage of the Genetic Information Nondiscrimination Act.
She also serves on the Advisory Panel for the Precision Medicine Initiative, boards of the National Academy of Medicine Board on Health Sciences Policyand many other health and research related organizations.
In 2005, Terry received an honorary doctorate from Iona College for her work in community engagement and haplotype mapping, and in 2007 received the first Patient Service Award from the UNC Institute for Pharmacogenomics and Individualized Therapy. She also accepted the Paul G. Rogers Distinguished Advocacy Organization Award from Research!America in 2009. In 2012, she received the Spirit of Empowerment Advocacy Award, Facing Our Risk of Cancer Empowered, and was given an Honorary Professorship, at Hebei United University, Tangshan, China. In 2013, she was named one of the Food and Drug Administration's Rare Disease Heros.
She also serves as the President of Schola Ministries, a nonprofit dedicated to producing the music of Kathleen Deignan.
Her work includes novel data-sharing projects such as Registries for All, winner of the Transforming Health Systems Ashoka Changemakers Award. She served on the Institute of Medicine Committee on the Necessity of Use of Chimpanzees in Biomedical and Behavioral Research and the IOM Committee on a Review of the California Institute for Regenerative Medicine. She is the co-chair of the National Academy of Medicine's Roundtable on Genomics and Precision Medicine.