Lara Bloom | President and CEO
The Ehlers-Danlos Society

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 leadership in shaping truly patient-centered global advocacy. She was also named a 2025 D-30 Disability List Honoree by Diversability, recognizing her as a prominent voice in the disability and rare disease space.