Sharon F. Terry

Sharon F. Terry Sharon F. Terry is President and CEO of Genetic Alliance, a large network engaging individuals, fami

As ‘just a Mom’ with a master’s degree in Theology, Sharon cofounded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in her two children in 1994. With her husband, she co-discovered the ABCC6 gene, patented it to ensure ethical stewardship in 2000, and assigned their rights to the foundation. She subsequently developed a diagnostic test and conducts clinical trials. She is the author of 140 peer-reviewed papers, of which 30 are clinical PXE studies.

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