The Chan Zuckerberg Initiative has announced grants totaling $13 million in support of patient-led rare disease advocacy organizations working to accelerate research on rare diseases.

Grants were awarded through the CZI Rare As One (RAO) Project, which aims to drive progress against rare diseases and help support patient communities. As many as seven thousand rare diseases affect four hundred million people globally. Through the program, twenty organizations will receive awards of $600,000 over three years to strengthen their organizational capacity, convene their communities, and align patients and researchers toward shared priorities. Recipients include CACNA1A Foundation, FamilieSCN2A Foundation, PCD Foundation, Raymond A. Wood Foundation, and the Stiff Person Syndrome Research Foundation.

In addition, twenty rare disease groups were awarded $50,000 in general operating support or core program support. Recipients include Hope for Hypothalamic Hamartomas, the Osteogenesis Imperfecta Foundation, the Sickle Cell Transplant Advocacy and Research Alliance, the Naa10 Foundation D/B/A Ogden Syndrome Foundation US, and the Vasculitis Foundation.

"Patients are experts in their own diseases, and their knowledge and commitment to advancing progress in their disease areas has the power to center patient priorities and dramatically accelerate the pace of research," said Rare As One program manager Heidi Bjornson-Pennell. "The RAO Network is proud to lift up these efforts by offering new tools, funding, and capacity-building support and training to help these organizations grow and scale."

(Photo credit: FamilieSCN2A Foundation)