Sharon Terry
Genetic Rights Advocate | Pioneering Citizen Science
About
Sharon Terry is a pioneering advocate for genetic rights and citizen science. As the President and CEO of Genetic Alliance, she has transformed how communities access and manage their health data.
Terry co-founded PXE International after her children were diagnosed with a rare genetic disorder, driving research and ultimately helping develop the first treatment. She is a sought-after keynote speaker, sharing her inspirational story of empowering patients to become active partners in medical discovery.
Talks1
Science didn't understand my kids' rare disease until I decided to study it
Meet Sharon Terry, a former college chaplain and stay-at-home mom who took the medical research world by storm when her two young children were diagnosed with a rare disease known as pseudoxanthoma elasticum (PXE). In this knockout talk, Terry explains how she and her husband became citizen scientists, working midnight shifts at the lab to find the gene behind PXE and establishing mandates that require researchers to share biological samples and work together.
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