Sharon Terry

Sharon F. Terry is President and CEO of Genetic Alliance, a network of over 10,000 organizations, including 1,200 disease advocacy groups, that empowers individuals, families, and communities to become full participants in translational research. She is also Adjunct Assistant Professor in the Department of Medicine and Director of the Clinical and Translational Science Institute at Tufts School of Medicine.

She is the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum, and a co-founder of the Genetic Alliance Registry and Biobank.

Sharon is the author of numerous peer-reviewed publications and serves in leadership roles across several major national and international bodies, including the International Rare Disease Research Consortium. She was named an Orphan Hero by the U.S. Congress and is also an Ashoka Fellow.