2023 Diagnostic Odyssey: Hypermobile Ehlers-Danlos Syndrome (hEDS) - Emily Rubenstein

2023 Patient-Focused Drug Development Meeting In collaboration with the FDA
Emily shares her experience searching for a diagnosis and proper treatment of her hEDS; emphasizing moments from her 10+ year search that highlights opportunities for improvement in patients' diagnostic and treatment journeys.
Given how challenging her own experience has been, Emily is interested in how she can help fellow zebras-diagnosed and yet to be diagnosed-advocate for themselves and receive the care they deserve.