Prof Lara Bloom

Lara Bloom is President and CEO of The Ehlers-Danlos Society, where she leads global efforts to raise awareness of rare, chronic, and invisible conditions, specializing in Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions. She spearheads international medical collaboration, research funding, education, and advocacy. A passionate leader in patient engagement and global collaboration, Lara was appointed Academic Affiliate Professor of Practice at Penn State College of Medicine in March 2020, marking a decade of work in patient advocacy. She is widely published and a sought-after keynote speaker at conferences, policy forums, academic lectures, and corporate events. Lara serves as Vice-Chair of the Board of the International Alliance of Patients’ Organizations (IAPO) and is a Board Member of Genetic Alliance UK. In June 2025, she received the prestigious Made with Patients Award at the Patient Engagement Open Forum (PEOF), honoring her leadershi