Advancing treatments for rare diseases Together

Sharon Terry

Sharon F. Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations, including 1,200 disease advocacy organisations. Genetic Alliance enables individuals, families and communities to become full participants in translational research.

She is the founding CEO of PXE International, a research advocacy organisation for the genetic condition pseudoxanthoma elasticum. Sharon is also a co-founder of Genetic Alliance Registry and Biobank. She is also the author of numerous peer-reviewed articles.

She serves in a leadership role on many major international and national organisations, including the International Rare Disease Research Consortium.  She is an Ashoka Fellow.

Sharon F. Terry
EspeRare President, CEO of Genetic Alliance &
Executive Board Member of the International Rare Diseases
Research Consortium (IRDiRC)