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

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 2016 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.