Rare As One Partner
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.