President and CEO
The Ehlers-Danlos Society
Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration (Penn State College of Medicine)
Member of the International Consortium for EDS and related disorders
Lara Bloom
Lara Bloom is President and CEO of The Ehlers-Danlos Society, where she leads global efforts to raise awareness of the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions. She is responsible for driving coordinated international medical collaboration, advancing education and awareness, and raising funds to accelerate patient-centred research and global progress.
A recognised global leader in embedding lived experience in the global health landscape, Lara is passionate about pushing boundaries, challenging systems, and ensuring that lived experience is embedded meaningfully across research, policy, and care. In March 2020, she was appointed Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine (USA), marking a decade of leadership in the field of patient advocacy and engagement.
Lara completed expert-level training in medicines research and development in 2016 and became a Fellow of the European Patients’ Academy (EUPATI) in its first cohort. She holds certification in Leadership and Strategy for Directors from the Institute of Directors (2023) and is a Certified Non-Profit Executive through NANOE (2024).
A published author in peer-reviewed journals, Lara is a sought-after international keynote speaker, contributing to global conferences, policy forums, academic lectures, corporate engagements, and fundraising events.
She serves as Chair of the Board of Directors for the International Alliance of Patients’ Organizations (IAPO) and sits on the Board of Genetic Alliance UK. Lara is a Fellow of the Royal Society of Medicine and a member of the Patient Group Engagement Committee at Beacon.
In recognition of her lifelong commitment to amplifying the patient voice in global health policy, research, and care, Lara received the Hall of Fame Made in Patients Award in June 2025. In July 2025, she was also named to Diversability®’s D-30 Disability Impact List, selected as one of 30 leaders from over 300 nominees for her impact in advancing disability inclusion and systemic change.
