Sharon Terry

President and CEOSharon 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 engages individuals, families and communities to transform health. She is the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). PXE affects Terry’s two adult children.  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.  She is the author of 140 peer-reviewed papers, of which 30 are PXE clinical studies. Terry is also a co-founder of the Genetic Alliance Registry and Biobank.  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, including the Accelerating Medicines Partnership, Institute of Medicine (IOM) Science and Policy Board, the IOM Roundtable on Translating Genomic-Based Research for Health, the PubMed Central National Advisory Committee, the PhenX scientific advisory board, the Global Alliance for Genomics and Health, the International Rare Disease Research Consortium Executive Committee and as Founding President of EspeRare Foundation of Geneva, Switzerland. She is on the editori...
Source: PHRMA - Category: Pharmaceuticals Authors: Source Type: news

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