Speakers

Lara Bloom is President and CEO of The Ehlers-Danlos Society, where she leads global efforts to improve health and social outcomes for people living with rare, chronic and invisible conditions. An internationally recognised advocate for patient-centred healthcare, Lara works to transform health and care systems by embedding lived experience into research, policy, education and service design.

With extensive experience driving international collaboration across clinicians, researchers, policymakers and industry, Lara champions equitable access to care, accelerates research and advances global standards for patient engagement. She is an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, where she supports the integration of lived experience into health innovation, value frameworks and healthcare policy.

A sought-after international speaker, Lara has presented at global conferences, policy forums and academic institutions on topics including patient engagement, ethics in AI, rare and chronic diseases, mental health and healthcare system transformation. She also serves as Chair of the International Alliance of Patients' Organizations (IAPO) and sits on the Board of Genetic Alliance UK.

Recognised internationally for her leadership and impact, Lara is passionate about building partnerships that accelerate health equity, amplify underrepresented voices and deliver meaningful, measurable change across healthcare.