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Josh Thayer (left) and Eunha Thayer (right) Thayer walk outside with their two dogs

Josh and Eunha Thayer of Massachusetts, take a stroll with their dogs Bubba and Eggy. Josh was diagnosed with Dysferlinopathy, a form of muscular dystrophy. He works as the General Counsel of the Jain Foundation, a patient advocacy group that supports the Rare Genomes Project and focuses on finding cures for Dysferlinopathy. Photo courtesy of the Rare Genomes Project.

Rare Genomes Project

The Rare Genomes Project, housed at the Broad Institute of MIT and Harvard, is a research study led by genomics experts in partnership with rare disease patients, families and advocates. Their goal is to make the latest advances in genomic sequencing accessible to those with rare and undiagnosed conditions. The Rare Genomes Project enables patients with rare and undiagnosed suspected genetic conditions to participate in research regardless of their location in the United States.

The Chan Zuckerberg Initiative supports the Rare Genomes Project in its exploration of new approaches to direct-to-patient outreach, development of scalable approaches to remote participation, creation of materials to support participants beyond the completion of the project, and expansion of rapid and open data sharing. All of the materials and resources developed by this project will be made openly available online and consented patient data will be made available through secure accessible databases, ensuring that other disease-focused projects can access them.

Rare As One Partner

Rare Genomes Project

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