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Rare As One Partner

Josh (left) and Eunha (right) Thayer walking outside with their two dogs
Josh and Eunha Thayer, of Massachusetts, taking 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 is focused 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 families and advocates, who believe that the latest advances in genomic sequencing should be accessible to those with a rare and undiagnosed condition. 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 available through secure accessible databases, ensuring that other disease-focused projects can access them to further research.

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Hear Rare Disease Stories

Listen to The Story Collider podcast featuring stories about patients who are driving progress against rare disease.