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.
This interactive session explores how historical clinical challenges, and the Ehlers Danlos patient experience should challenge us to rethink how we define inclusion, eligibility and trustworthiness in clinical research and AI. What authentic steps can industry take to “heal the harm” and promote safer practices in RWE and AI? How can we rebuild trust and design patient informed programs with communities that have been marginalized or misunderstood?
2-3 PM:- Early/Expanded Access Programs: Explore ways to better execute EAPs in Europe that ensure an optimized experience, from patient discovery to engagement.
Moderator: Andrew Cummins, Vice President, Business Development, Sciensus
Panel: Jim McGrath, Director of Commercial Policy, Irish Pharmaceutical Healthcare Association
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3-4 PM:- Regulatory, Pricing, and Market Authorisation: How best to navigate the complex European environment to ensure the best approach and successful execution of these critical components of the development journey.
Moderator: Doug Niven, European Strategic Consultant, Sciensus
Panel: Andrew Cummins, Vice President, Business Development, Sciensus
Ralph Hughes, Chief Business Officer, Faron Pharmaceuticals
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4-5 PM:- Patient Engagement and In-Market Support: What are best practices for patient-focused support programs, distribution, and digital solutions post-approval and in-market.
Moderator: Ray Huml, Vice President of Rare Strategy, Sciensus
Panel: Mathieu Loiseau, Director of Rare Clinical Services, Sciensus
Patricia Furlong, Preseident, PPMD
Lara Bloom, CEO, Ehlers-Danlos Society
Sophie Muir, Chair of Trustees, Timothy Syndrome Alliance