CLOVES Syndrome Community applied for and was selected to receive an additional year of funding ($150,000) and resources with the Rare As One Network! This patient-led research network has been transformational, awe-inspiring and humbling to be a part of. We are truly grateful!
“In 2019, the Chan Zuckerberg Initiative launched the Rare As One Network, funding 30 patient-driven rare disease organizations to develop research networks, convene their communities, and identify shared researcher-patient prioritized goals in their disease areas. In just two years, each of the Rare As One Network grantees has made significant progress in advancing research — effectively organizing and diversifying their patient communities, catalyzing research networks, raising research funds, shaping research priorities, developing research-enabling infrastructure and industry partnerships, and launching clinical trials. They have demonstrated that with a motivated leader, access to well-designed training in a few key areas, and the opportunity to collaborate and learn alongside others, patient-led rare disease organizations can have a critical, and outsized, impact on research. After seeing the success of this Network and how patient organizations benefitted from the collaboration and network effect, CZI provided additional support to extend participation in the Network for another year.”