Lara Bloom | President and CEO
The Ehlers-Danlos Society
Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic, and invisible diseases, specializing in the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions. Lara leads coordinated medical collaboration, raising funds for research and focuses on global progression, education and awareness. Her passion is pushing boundaries and fighting for progression in Patient Engagement and Global Collaboration, and she was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, in March 2020, which commemorated ten years in the field of patient engagement and advocacy leadership. She is a published author in various renowned journals and speaks worldwide at conferences, policy meetings, corporate and fundraising events and academic lectures as an expert keynote speaker.
Appearances:
Day 1- World Orphan Drug Congress USA 2025 @ 14:00
Roundtable 5: Co Creating a patient advocacy engagement plan for early access programs (EAPs)
- A collaborative discussion on how to engage patient advocacy groups when planning early access programs – covering frameworks, educational resources, compliance considerations and communication strategies.
- Case studies involving rare disease patient advocacy groups including examples of how to tailor your specific engagement plans
- Opportunity to develop practical early access patient engagement plan to be provided as an industry resource.
Sponsored by Bionical Emas.
Day 2 - World Orphan Drug Congress USA 2025 @ 15:20
Presentation: The importance of validation and belief when living with a rare disease
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