Alliance to Cure Cavernous Malformation Receives $600,000 Award from the Chan Zuckerberg Initiative to Advance Rare Disease Research

Red square with the text "Rare as One"New Grants Support Organizations Prioritizing Diversity and Diagnosis in their Disease Areas

 CHARLOTTESVILLE, VA (November 3, 2021) — Today, the Chan Zuckerberg Initiative (CZI) announced $13 million in funding for 40 patient-led, rare disease advocacy organizations that are working alongside researchers and clinicians to accelerate research in their disease areas.

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.

Rare disease is not rare. As many as 7,000 rare diseases affect 400 million people globally. The Rare As One Project is committed to uniting rare disease patient advocates in their quest for cures.

With today’s announcement, Alliance to Cure Cavernous Malformation was announced as one of several patient-driven rare disease organizations that will join the initial 30 grantee organizations awarded in February 2020 as part of the “Rare As One Network.” Funding from these grants will support Alliance to Cure Cavernous Malformation’s mission to inform, support, and mobilize those affected by cavernous malformation (abnormal blood vessels in the brain that can hemorrhage and cause stroke or seizure at any age), 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 malformation, strengthen organizational capacity, convene their communities, and align patients and researchers towards shared priorities.

Alliance to Cure Cavernous Malformation seeks to reduce barriers to cavernous malformation (CCM) diagnosis and improve care in all settings, for all people. This generous grant award and the tools offered by CZI will allow us to create the infrastructure needed to advance research and accelerate the cure for CCM – Connie Lee, Founder, Alliance to Cure Cavernous Malformation

 As a non-profit organization, Alliance to Cure Cavernous Malformation develops and executes strategic, creative, high-return interventions as a model for rare diseases.

Alliance to Cure Cavernous Malformation, founded in 2002, is a national 501c3 nonprofit patient advocacy and research organization whose mission is to inform, support, and empower individuals affected by cavernous malformation (CCM) and drive research for better treatments and a cure. For more information about Alliance to Cure Cavernous Malformation and cavernous malformations, visit

About the Chan Zuckerberg Initiative

The Chan Zuckerberg Initiative was founded in 2015 to help solve some of society’s toughest challenges — from eradicating disease and improving education to addressing the needs of our local communities. Our mission is to build a more inclusive, just, and healthy future for everyone. For more information, please visit