RARE Daily

CZI Begins New Round of Funding for Rare Disease Organizations

March 30, 2021

Rare Daily Staff

Chan Zuckerberg Initiative said it has opened a new Rare As One funding opportunity inviting patient-led organizations to apply for a three-year grant opportunity to support the development of a patient-led collaborative research network to address diagnosis, diversity, and the search for treatments and cures.

This grant program will accept applications up to 5 p.m. Pacific time Tuesday, June 2, 2021. If awarded, each grant will be up to $600,000 in total costs over a period of three years. The grants are intended to support patient-led rare disease advocacy organizations in the development, or meaningful expansion, of an international, patient-led collaborative research network in the disease area. Organizations must be 501(c)(3) nonprofits to be eligible.

Throughout the grant period, CZI will provide grantee organizations with capacity building support, including funding, training, community learning opportunities, and mentorship. In turn, it asks 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.

The funding opportunity follows CZI’s launch of its Rare As One Project in 2019. Details about applying for the grant can be found on the CZI website. Rare As One seeks 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.

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.


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