The Chan Zuckerberg Initiative (CZI) focuses on leveraging the power of patients to accelerate research and drive progress against rare diseases. Through close collaboration with patient communities, rare disease experts, and advocacy organizations, CZI aims to empower patient-led initiatives in combating rare diseases.
The Rare As One Project by CZI aims to create a cohort of patient-led rare disease advocacy organizations dedicated to accelerating research in three specific disease areas: channelopathies, ciliopathies, and inborn errors of metabolism (IEMs). This initiative involves a five-year grant opportunity for organizations to join the Rare As One Network. CZI's support includes accelerating research within the individual disease areas, developing shared research priorities and proposals, and strengthening organizational and scientific capacities. Up to 30 patient-led organizations will receive funding and support to assemble or enhance a collaborative research network, convene their disease community, and develop a patient-prioritized research agenda. Additional capacity-building support includes training, community learning opportunities, and mentorship, with the expectation that organizations actively participate in the network, identify shared research priorities, and collaborate on research proposals that may receive further CZI funding.
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