Sharon Terry, speaking at World Orphan Drug Congress 2011

Sharon Terry,
CEO
Genetic Alliance

Sharon F. Terry is President and CEO of the Genetic Alliance, a network transforming health by promoting openness as process and product, centered on the health of individuals, families and communities. She is the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). Following the diagnosis of their two children with pseudoxanthoma elasticum (PXE) in 1994, Sharon, a former college chaplain, and her husband, Patrick, founded and built a dynamic organization that enables ethical research and policies and provides support and information to members and the public. Along with the other co-inventors of the gene associated with PXE (ABCC6), she holds the patent for the invention, and with the assignment of all rights to PXE International, is its steward. She co-directs a 33-lab research consortium and manages 52 offices worldwide for PXE International. Ms. Terry is also a co-founder of the Genetic Alliance Registry and Biobank. It is a centralized biological and data repository catalyzing translational genomic research on genetic diseases. The BioBank works in partnership with academic and industrial collaborators to develop novel diagnostics and therapeutics to better understand and treat these diseases.

She is at the forefront of consumer participation in genetics research, services and policy and serves as a member of many of the major governmental advisory committees on biomedical research, including the HIT Standards Committee for the Office of the National Coordinator for Health Information Technology, liaison to the Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children and the National Advisory Council for Human Genome Research, NHGRI, NIH. She serves on the boards of the Institute of Medicine Science and Policy Board, GRAND Therapeutics Foundation, the Center for Information & Study on Clinical Research Participation, The Biotechnology Institute, National Coalition of Health Professional Education in Genetics, and the Coalition for 21st Century Medicine. She is on the editorial boards of Genetic Testing and Biomarkers, Biopreservation and Biobanking, and Journal of Postgenomics: Drug & Biomarker Development, and the Google Health and Rosalind Franklin Society Advisory Boards. She is the chair of the Coalition for Genetic Fairness that was instrumental in the passage of the Genetic Information Nondiscrimination Act. She is a member of the Institute of Medicine’s Roundtable on Translating Genomic-Based Research for Health.

In 2005, she received an honorary doctorate from Iona College for her work in community engagement and haplotype mapping; in 2007 received the first Patient Service Award from the UNC Institute for Pharmacogenomics and Individualized Therapy; and in 2009 received the Research!America Distinguished Organization Advocacy Award. She was elected an Ashoka Fellow in 2009. She received the Clinical Research Forum and Foundation’s Annual Award for Leadership in Public Advocacy in 2011.

Terry is committed to personal transformation as a catalyst for the systems change needed to improve health and wellness. She lives with her husband Patrick and their two children in Maryland.

Appearing:

World Orphan Drug Congress Day 1 Tuesday 29th November 2011

9.10am

Keynote address: Collaborative innovation: the international ambitions of the IRDiRC

Is the progress made in rare disease treatments only the tip of the iceberg?
Why progress in orphan drugs is being fostered through international collaboration?
What are the challenges and objectives of this global initiative?
How can all orphan drug stakeholders contribute towards fulfilling the patient need?

Sharon Terry,

CEO,
Genetic Alliance

World Orphan Drug Congress Day 2 Wednesday 30th November 2011

12.55pm

The ultimate data capture: creating a global registry of patient registries

What is the current state of patient registries for all rare diseases?
How would industry benefit from a comprehensive media outlet of qualified and aggregated database of rare disease patients, in particular post-marketing studies and extending label?
A user-friendly template to assist patient organisations in setting up their own registries cheaply to make the rarest commodity accessible
How can patient advocates drive themselves, put themselves in the decision making position thereby empowering all stakeholders of orphan drug development?

Sharon Terry,

CEO,
Genetic Alliance

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