EspeRare foundation
Sharon Terry is the President & CEO at Genetic Alliance, founding President & CEO at Genetic Alliance BioBank, a Teacher/facilitator at Tribal Ground, a Fellow at Ashoka, President at EspeRare foundation, Chair at Coalition for Genetic Fairness, President at Schola Ministries, and Founding Executive Director at PXE International. Sharon has also served as a Strategic Advisor at LunaPBC, Educator at Museum of Science Boston, and Chaplain at Assumption College. Sharon holds a MA in Religious Studies from Assumption University, a BA in Earth and Space Sciences from Stony Brook University, and a LHD in Community Engagement from Iona University.
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EspeRare foundation
EspeRare is a not-for-profit organization established in Switzerland and recognized to be operating in the public interest. In collaboration with patient groups and other key stakeholders, EspeRare focuses on rescuing and repositioning discontinued therapies with high potential to address severe and currently neglected therapeutic needs of children affected by rare genetic diseases. EspeRare is using its pharma R&D expertise and patient-centric model to advance novel treatments for the undeserved patients, thus bringing hope for better future to these children and their families.