Future of Health Summit 2026

More Than a Voice: How Patient Organizations Are Driving Industry R&D from the Start

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Meaningful access to innovation begins long before a therapy reaches the pharmacy. For millions of people living with complex chronic conditions, rare diseases, and underserved diagnoses, the gap between a promising treatment and an accessible one is shaped as much by who is at the R&D bench as by the science itself. In this session panelists will examine how partnerships linking patient organizations and industry are emerging as powerful levers for more equitable and efficient biomedical innovation. The panel of patient-organization executives will explain how patient organizations are shaping development priorities, clinical trial design, and access strategies from the start. 

    Moderator

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    Ebony Dashiell-Aje

    Executive Director and Head, Patient Centered Outcomes Science, BioMarin Pharmaceutical Inc.

    Speakers

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    Manuela Battaglia

    Managing Director, INNODIA
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    Laura MacNeill

    CEO, CMT Research Foundation
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    Sudhir Sivakumaran

    Chief Scientific Officer, Lewy Body Dementia Association
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    Emily Taylor

    President and CEO, Solve M.E.