Speaker - Sharon Terry

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Sharon F. Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations, of which 1,200 are disease advocacy 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. She developed a diagnostic test and conducts clinical trials. Terry is also a co-founder of the Genetic Alliance Registry and Biobank. She is the author of more than 100 peer-reviewed articles. In her focus 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.

5 Programs

Reg4All: A New System for Connecting Health Information

04.25.13 | 00:15:20 min | 0 comments

Redefining How We Build Better Maps of Disease

04.21.12 | 00:58:01 min | 0 comments

Enablement by Governance and Patient Consents

04.20.12 | 00:35:28 min | 0 comments

Sharon Terry: Engaged Public

04.16.11 | 00:13:03 min | 0 comments

Sage Congress: Sharon Terry, Genetic Alliance

04.24.10 | 00:09:43 min | 0 comments