abstract
Future of Health Summit 2024

Beyond Checkboxes: Elevating Diversity and Representativeness in Patient Engagement

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The gold standard for obtaining patient input for biomedical research once was ensuring a representative sample of the population with the disease. Concurrently, in the past several years there has been a growing movement to more deliberately and equitably include historically underrepresented and underserved communities in R&D activities. As this movement has evolved, patient organizations are transforming their approaches to meet the demand for representative, equitable, and diverse patient engagement in R&D activities. In this session, we will hear from patient foundation leaders about the practical challenges of pursuing diverse and representative patient engagement and where there are lessons learned and opportunities that are applicable to others pursuing more diverse and inclusive research activities. 

    Moderator

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    Charlene Son Rigby

    CEO, Global Genes

    Speakers

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    Silvia Cerolini

    CEO, Eyes on the Future
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    Deena Chisholm

    Director, Research Engagement, TANGO2 Research Foundation
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    Michelle Stewart

    CEO, PanKind
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    Emily Ventura

    Executive Director, PFIC Network