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), Cycle 2 ($13 million), and Cycle 3 ($24 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.

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.

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.

Closed

This RFA supports patient-led nonprofit organizations as they launch collaborative research networks and work together to accelerate progress against rare diseases.

Rare As One

Cycle 1 - $13.5 Million
Cycle 2 - $13 Million
Cycle 3 - $24 Million

Closed

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.

Closed

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

News & Stories

Interested in learning more about our efforts to encourage people to trust science? Get the latest information from the links below.

A group photo of adults and children, some of whom are in wheelchairs, gathered outdoors with smiles set against a soft blue background.

Science

Our Rare Disease Network Goes Global

Five people smile at the camera with an ocean sunset in the background.

Climate

6 Breakthrough Climate Research Initiatives

Samantha Baxter, a senior clinical genomics specialist, stands and points towards a computer screen displaying the GeniE tool while three colleagues sit and watch attentively in a meeting room at the Broad Institute.

Science & Technology

How Technology is Democratizing Genetic Research for Rare Diseases

Woman pushing a man in a wheelchair in front of the Capitol Building in Washington, D.C.

Science

Amazon To Debut CZI-Supported Award-Winning Documentary

Four circular images related to CZI’s work in science, education and California’s Bay Area community on a blue gradient background. The images are connected by thin lines and dots.

2023 Look Back

7 Memorable Moments & Learnings From Across Our Work

Science

Apply: Rare As One RFA (Cycle 3)

Monkol Lek and Rachel Alvarez smile on a pink background.

Science

2 Rare Disease Patient Leaders Share Their Stories

Khari McCrary, a teenage girl, wearing a graduation cap and sitting in a wheelchair, smiles in the school parking lot.

Science

Working To Cure This 'Cruel' Form of Epilepsy

Mother reading to her two children including a teenage daughter and younger son.

Science

How Patients With Rare Diseases Are Accelerating Groundbreaking Research

GRANTS

Patient-Partnered Research on Neurodegenerative Disorders

Meet the Grantees

GRANTS

Patient-Partnered Research Using Single-Cell Methods

Meet the Grantees

An illustration of a father in a suit kneeling down next to his son. Behind them is text that reads “Snyder-Robinson Syndrome” and labels the son as Connor Raymond and the father as Michael Raymond. Behind them are also speech bubbles that say “seizures, speech issues, brittle bones.”

Science

Father Unites With Scientists in Quest for Cure

Explore Photo Story

A woman wearing blue jeans and a puffy vest smiles and stands in a field with her hands in her pockets.

Life at CZI

What It’s Like Working on the Rare As One Project

Portraits of three smiling women on a red background with illustrations of DNA and cells.

Science

What Is Sarcoidosis Disease?

A photo of two smiling women on a green background next to a photo of a smiling woman with glasses on a blue background.

Science

What It’s Like Navigating Rare Disease

Science

Expanding the
Rare As One Network

Science

Rare As One Request for Information: Patient Registry Data Interoperability

Science

Apply: Rare As One RFA (Cycle 3)

Science

Fast Company (Op-Ed): Why Patients Have Begun to Lead the Way in the Fight Against Rare Diseases

Science

Driving Progress Against Rare Diseases

Science

Supporting Science and Technology Policy Fellows

Science

Supporting Increased Diversity in Science Journalism

SCIENCE

I AM ALS: Leading the Search for a Cure

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Science in Society Team

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