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

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June 15, 2017 Today's TED Talk Science didn't understand my kids' rare disease until I decided to study it 15:02 minutes · TEDMED 2016 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. Watch now »   Playlist of the Day Talks by brilliant women in STEM These women are trailblazers inspiring a new generation of girls to follow their lead and change the ratio in STEM (science, math, engineering and tech). Watch » 11 talks · Total run time 2:30:13 NEW ON IDEAS.TED.COM The hidden truth about our prescription medications Much of the data from clinical trials is withheld from the public, says scientist and advocate Síle Lane. This missing information is costing money, time and even people’s lives. Read more »   Download the TED app

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