Sharon Terry

Science didn't understand my kids' rare disease until I decided to study it

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About Sharon Terry

Former college chaplain and Ashoka Fellow Sharon Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations. She’s the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), which affects Terry’s two adult children. She has taken citizen science (discovering the gene for PXE, developing a diagnostic test, conducting clinical trials) to a national and international arena and is developing participant-centric pathways for ordinary people to transform biomedical research and healthcare. She serves in leadership roles for many collaborations focused on productively disrupting research and policy. Sharon led the coalition that fought for the passage of the Genetic Information Nondiscrimination Act. In her spare time, she enjoys traveling and paragliding with her husband. 

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About This Talk

Sharon Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations, and the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), which affects Terry’s two adult children. In Sharon's TEDMED Talk she shares how her children's diagnoses inspired her—a person with no medical background—to embrace citizen science as a means to transform biomedical research and healthcare.

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