Sharon Terry

Sharon Fontaine Terry

Sharon Terry's picture
Name: Sharon Terry
Organization: Genetic Alliance
Website:
Title: President & CEO
Bio:
Sharon F. Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations. Genetic Alliance enables individuals, families and communities to reclaim their health and become full participants in translational research. She is the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). As co-discoverer of the gene associated with PXE, she holds the patent for ABCC6 to act as its steward and has assigned her rights to the foundation. Terry is also a co-founder of the Genetic Alliance Registry and Biobank. She was the chair of the Coalition for Genetic Fairness that fought for the passage of GINA. She is at the forefront of consumer participation in genetics research, services and policy, she serves in a leadership role on many of the major international and national organizations, including the ONC HIT Standards Committee. She is an Ashoka Fellow.

Challenge Entries

Mar 09, 2016 / 0 Comments / in Health care

Hint: This will be the first introductory text about this project that viewers will see.

Reg4All: The registry for all people, all diseases, all health.

The world's first participant-controlled, cross-disease health data registry. Because the haystack is made of needles.

Giving participants control, accelerating research, allowing support and trials to flow to the people.