Patrick Terry

President, PXE International


Patrick Terry brings the wisdom of a perspective forged from personal experience and extensive work in the lay advocacy (patient) community. Following the diagnosis of their two children with a rare condition, pseudoxanthoma elasticum (PXE) in 1995, Patrick and his wife, Sharon, founded PXE International, a dynamic lay organization that initiates, coordinates and funds research, as well as worldwide patient support. In the years since, PXE International has grown to include an international 19 lab consortium, 52 support offices worldwide, a private blood and tissue bank, and a database registry of thousands of affected individuals. The culmination of his effort toward global coordination of research has led to tremendous scientific advances for PXE and related diseases.

Patrick has worked with many professional medical organizations, and is on the professional advisory board of the Genetic Alliance of Washington, DC. His participation in biomedical research in our nation's capital has been instrumental in the overall increased funding for the NIH as well as recognition of the power and importance of lay advocacy groups. In all of his work he has emphasized the importance of the consumer as a full and active partner in the collaborative process of genomics research and healthcare services. His vision for creating a new paradigm for empowering consumer involvement in research has not only been brought to fruition in the success of PXE International, but has been embodied in mentoring many other lay advocacy organizations.

Patrick is a social entrepreneur who has founded a series of innovative philanthropic, research, and commercial organizations based on the life sciences, applied technology, and social-network theory. He is the co-founder of Genomic Health [NASDAQ: GHDX], and former Director at the pioneering personalized medicine company based in California. He is a lay person – his scientific, technical, and medical knowledge is all self-taught. He has published dozens of peer-reviewed scientific papers, articles, and book chapters in the fields of genetics, translational research, and personalized medicine. Some of his past activities included leadership positions on numerous trade associations, professional societies, corporate boards, and federal advisory bodies. He has experience doing hands-on bench science, coordinating human genetics research, conducting basic research on rare diseases, and managing a life sciences patent portfolio. He has received many honors and awards in the business and scientific communities in the U.S. and internationally. He has dedicated his career to helping people and advancing a patient-centered perspective in research, product development, and translational medicine.

Patrick has also founded the following organizations: Personalized Medicine Coalition, 21st Century Medicine Coalition, Genomic Health, Genetic Alliance BioBank, Technic Solutions, International Genetic Alliance, BioLogos Foundation, and Grand Therapeutics.

Patrick now works as Chief Commercial Officer at Claritas Genomics in Boston, Massachusetts.


Presentations at the 2010 Biennial Conference and Prior

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