Speaker Profile

President and CEO, Genetic Alliance
Biography

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.

Session Abstract – PMWC 2017 Silicon Valley

Session Synopsis: Data aggregation and data sharing efforts exist all over the world yet there is no platform or ecosystem that brings all of these efforts together. What are the challenges of creating a universal approach to data sharing (such as Cancer Moonshot) versus private and/or proprietary approaches that are trying to differentiate themselves? In this session you will hear from industry leaders who have direct experience in the world of data sharing and data aggregation. You will get a better understanding of the true challenges behind data sharing efforts and what it will take to create a universal movement that will benefit all stakeholders.

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