The Planet of Rare Diseases - Sharon Terry -

Planeta bolilor rare
Dan Alexandru


We will listen an inspirational speech given by a change maker in the field of rare diseases. She’s the founding CEO of PXE International, a research advocacy organization for an extremely rare genetic condition which affects her two adult children. She has taken citizen science to a national and international arena and is developing participant-centric pathways for ordinary people to transform biomedical research and healthcare.