Sharon F. Terry is the President and CEO at Genetic Alliance, where her leadership fuels an initiative dedicated to empowering individuals, families, and communities to take charge of their health and spearheading progress in biomedical research. Genetic Alliance delivers impactful programs, products, and tools designed to recognize the power of people in alleviating suffering.
As ‘just a Mom’ with a master’s degree in Theology, she 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. This research advocacy entity champions efforts to find a treatment for PXE. Her remarkable scientific contributions include co-discovering the ABCC6 gene, pioneering a diagnostic test, and leading clinical trials. Sharon is an esteemed author with 150 peer-reviewed publications, including 30 pivotal clinical studies on PXE. Her inspiring journey is described in her TED Talk and TED Radio Hour.
With her gaze fixed on enhancing consumer participation in genetics, Sharon holds influential positions across several preeminent international and national bodies. These include the Precision Medicine Initiative Cohort Advisory Panel, Accelerating Medicines Partnership, National Academy of Medicine’s Roundtable on Genomics and Precision Health, NAM Board on Health Sciences Policy chair, and many more. As a founding figure, she’s left her mark on organizations like the EspeRare Foundation and the International Rare Disease Research Consortium.
Sharon’s advocacy led to the landmark passage of the Genetic Information Nondiscrimination Act. Her accolades include an honorary doctorate from Iona College in 2006, the Research!America Distinguished Organization Advocacy Award in 2011, and the Clinical Research Forum’s Leadership in Public Advocacy Award. FDA acknowledged her as one of the “30 Heroes for the Thirtieth Anniversary of the Orphan Drug Act” in 2013. She’s also a co-inventor of PEER, backed by a significant grant from the Robert Wood Johnson Foundation.
As a beacon of participatory health, Sharon was honored with the Luminary Award from the Precision Medicine World Conference in 2019 and is celebrated as an Ashoka Fellow since 2009. She received the American Society of Human Genetics Advocacy Award in 2021. Terry is an Ashoka Fellow since 2009 in recognition of her consumer engagement in health and medicine. She is an avid student and facilitator of Gestalt Awareness Practice, offering workshops and individual facilitation. Her daughter and son are why she started down this path. They, their wives, and her granddaughter ground and enliven her.