abstract
Future of Health Summit 2024

Catalysts of Change: Philanthropy, Advocacy, and Innovation in Rare Disease Research

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Rare disease patients, advocacy groups, philanthropists, and researchers have overcome significant challenges in their efforts to improve treatment and care. Over the past decade, clinicians have made remarkable progress by adopting innovative techniques, including holistic patient assessments, using genomics and other data-driven approaches, and targeting the root causes of these conditions rather than just symptoms. These methods, though initially applied to rare diseases, could also enhance diagnosis and reduce costs for common conditions. The rare disease sector exemplifies effective cross-stakeholder collaboration, potentially offering a model for transforming medical research and creating a more efficient R&D process for all diseases. 

    Moderator

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    Caitlyn Barrett

    Director, Science Philanthropy Accelerator for Research and Collaboration (SPARC), Milken Institute Strategic Philanthropy

    Speakers

    YC

    Yvette Cozier

    Associate Dean for Diversity, Equity, Inclusion, and Justice, School of Public Health, Boston University
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    William A. Gahl

    Senior Investigator, National Human Genome Research Institute, National Institutes of Health
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    Adam C. Resnick

    Director, Center for Data-Driven Discovery in Biomedicine (D3b), Children's Hospital of Philadelphia
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    Tania Simoncelli

    Vice President, Science In Society, Chan Zuckerberg Initiative