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, through the Rare As One Project, to lift up the work of patient communities and 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 2) Request for Applications (RFA), CZI is inviting patient-led, U.S.-based nonprofit 501(c)(3), rare disease advocacy organizations to apply for a three-year grant opportunity to support the development (or meaningful expansion) of an international, patient-led collaborative research network in the disease area. CZI will provide support to 20 patient-led organizations to build a network of researchers, clinicians, and patients working together to align on the state of the science, identify the open research questions, and develop shared research priorities—putting emphasis on addressing diagnosis-related research challenges, and directing attention to the diversity of needs of the full patient community. 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 share experiences and learnings with one another, and together work to identify how to best address the most pressing needs across a spectrum of rare diseases. Read our Medium post to learn more.
We recognize patient communities as the agents and architects of their own change. We are connecting and partnering with the rare disease community to provide resources and tools for patient communities to be more effective advocates for, and partners in, research. Please visit our website to learn more.
This grant program will accept applications starting at 9 a.m. Pacific Time Tuesday, March 23, 2021 until 5 p.m. Pacific Time on Tuesday, June 2, 2021. If awarded, each grant will be up to $600,000 total costs over a period of three years.