Angioma Alliance has been announced as one of several patient-driven rare disease organizations that will join the Chan Zuckerberg Initiative (CZI) Rare As One Network and receive a $200,000 award each year for the next three years. Funding from these grants will support Angioma Alliance’s mission to inform, support, and mobilize those affected by cavernous angioma, and drive research for better treatments and a cure. Funding will also be used to advance the development of an international, patient-led collaborative research network surrounding cavernous angioma, strengthen organizational capacity, convene our community, and align patients and researchers towards shared priorities. Specific projects will be announced in the coming months.

Angioma Alliance seeks to reduce barriers to cavernous angioma (CCM) diagnosis and improve care in all settings, for all people. This generous grant award and the tools offered by CZI will allow creation of the infrastructure needed to advance research and accelerate the cure for CCM

The Chan Zuckerberg Initiative announced $12 million in funding to the 20 patient-led, rare disease advocacy organizations that are newly joining the Rare as One Network. These grants are part of CZI’s Rare As One (RAO) Project, aimed at supporting and lifting up the work that patient communities are doing to drive progress in the fight against rare diseases. The Rare As One Project is committed to uniting rare disease patient advocates in their quest for cures.