The Chan Zuckerberg Initiative has announced a new program dedicated to accelerating research on and advancing progress against rare diseases.
With guidance from patient communities, experts, and advocacy organizations, the Rare As One Project will support patient-led organizations in launching collaborative research networks for their specific rare disease. To that end, the program will provide up to $4.5 million in initial funding as well as capacity-building assistance, assistance with technology, and advice with respect to scaling. Worldwide, up to 400 million individuals are affected by seven thousand rare diseases, though many are not well known and less than 5 percent have an FDA-approved treatment.
CZI has made several grants to rare disease initiatives since 2017, including a grant of $1.25 million to Global Genes to create educational materials that help drive the creation of patient-led research groups; a grant of $749,287 to the Rare Genomes Project and the Broad Institute of MIT and Harvard in support of new approaches to the engagement and recruitment of rare disease families; and a grant of $406,640 to the Castleman Disease Collaborative Network for the purchase of software tools and infrastructure in support of patient-led collaborative research networks.
"Patients are a critical part of the solution to finding cures for their diseases — especially when it comes to rare diseases, the majority of which are not well understood," said Priscilla Chan, co-founder and co-CEO of CZI. "We hope that by partnering with the rare disease community, we can help support patients and patient-led organizations to make progress that not only delivers breakthroughs in their disease areas — but that accelerates broader research discoveries."