Science in Society

Science is one of our most important tools for developing knowledge about the world around us and for understanding health and disease. Effectively leveraging science to address society’s greatest challenges requires broad public trust in science. To build that trust, we work with patient communities, scientists, policymakers, advocates, and philanthropic partners to foster meaningful integration of science and society. By facilitating more responsive and inclusive practices, we bring biomedical research closer to the communities it aims to serve.

The Science in Society program has funded the following RFAs:

Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Pediatric Disease, $10 million
Patient-Partnered Collaborations for Rare Neurodegenerative Disease, $10 million
Rare As One (Cycle 1, $13.5 million and Cycle 2, $13 million)

Group of young people at Li-Fraumeni Syndrome Association youth workshop, posing with blue LFSA banner.

Li-Fraumeni Syndrome Association hosts its second LFSA Youth Workshop. The group, which represents youth from six countries, spent an afternoon touring Boston, Massachusetts, and learning at Dana Farber Cancer Institute. Photo courtesy of Li-Fraumeni Syndrome Association.

INADcure Foundation president and co-founder holding her young daughter, who has the rare disease Infantile Neuroaxonal Dystrophy, as both smile.

Leena Panwala, president and co-founder of the INADcure Foundation, holds her daughter Ariya, who has the rare disease infantile neuroaxonal dystrophy (INAD). Photo courtesy of the INADcure Foundation.

Rare As One Project

Rare disease is anything but rare. As many as 10,000 rare diseases affect over 300 million people globally. The vast majority are not well understood, and approved treatments have been developed for less than 5% of them. Yet worldwide, patients are meeting these challenges head on. The Rare As One Project is committed to uniting these communities in their quest for cures.

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This RFA aims to support the application of single-cell biology methods to rare inflammatory pediatric diseases that will clarify cellular mechanisms of disease, understand disease heterogeneity, and improve biomarker identification or diagnostics.

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This RFA aims to advance the understanding of the pathophysiology and mechanistic underpinnings of rare neurodegenerative and neurological disorders.

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This RFA supports patient-led nonprofit organizations as they launch collaborative research networks in partnership with clinicians and researchers to accelerate progress against rare diseases.