President and CEO, Genetic Alliance

Sharon Terry is President and CEO of the Genetic Alliance, a network transforming health by promoting openness and is founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). Her memberships and advisories include the International Rare Disease Research Consortium and the Institute of Medicine Science and Policy Board. She was instrumental in the passage of the Genetic Information Nondiscrimination Act. Among other awards she received was the Clinical Research Forum and Foundation's Annual Award for Leadership in Public Advocacy in 2011.


Speaking of Rare Diseases: Transforming the Paradigm

Rare diseases have faces and stories. The real people involved in these experiences have a great deal to do with the coming revolution to transform solutions. Time to combine the qualitative and quantitative in ways that liberate new paradigms.

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