At the Chan Zuckerberg Initiative (CZI), we believe in supporting and leveraging the power of patients to accelerate research and drive progress against rare diseases. That’s why — with continued guidance from patient communities, rare disease experts, and advocacy organizations — we are continuing to lift up the work of patient communities. Through the Rare As One Project, we will scale a model in which patients, researchers, clinicians, and others work together to advance progress against their diseases.
Through the Rare As One Network (Cycle 3) Request for Applications (RFA), CZI seeks to create a cohort of patient-led rare disease advocacy organizations that are dedicated to accelerating research across three classes of disease: channelopathies, ciliopathies, and inborn errors of metabolism (IEMs). CZI is inviting patient-led rare disease advocacy organizations focused on diseases within these three scientific focus areas to apply for a five-year grant opportunity to join the Rare As One Network. CZI will provide awardees with support to accelerate research within their individual disease areas and to work across their area of scientific focus (channelopathies; ciliopathies; or inborn errors of metabolism) to develop shared research priorities and proposals.
CZI will provide support for up to 30 patient-led organizations to strengthen organizational and scientific capacities; assemble or strengthen a collaborative research network, including basic researchers focused on the area of scientific focus; convene their disease community; and develop a patient-prioritized research agenda within the disease area. Throughout the grant period, CZI will provide grantee organizations with capacity building support, including funding, training, community learning opportunities, and mentorship. In turn, we ask the organizations to participate as active members of the Cycle 3 cohort and overall Rare As One Network. This includes participation in regular calls, convenings, and collaborating with the other organizations within their area of scientific focus to identify shared research priorities and to develop research proposal(s) that could be eligible for funding under a possible supplemental CZI grant program.