CLOVES Syndrome Community

About CLOVES Syndrome Community

The vision of CLOVES Syndrome Community is an improved quality of life for those living with CLOVES syndrome. Our mission is to support, educate, empower and improve the lives of those affected by CLOVES syndrome. CLOVES Syndrome Community does this by cultivating a thriving patient community, convening medical and family conferences, publishing books for children, funding medical research and assisting families with long term medical costs. We also bring families together for Betsy’s Camp, an annual opportunity for community, fun and relaxation. CLOVES Syndrome Community is part of the Chan Zuckerberg Initiative, Rare As One Network— a group of 30 patient-led organizations that are driving progress in the fight against rare diseases. We’re proud to be creating a patient-led research network to accelerate research and find treatment options for people with CLOVES and PIK3CA Related Conditions. You can learn more about how CSC’s team is advancing research, advocacy, and education by visiting CLOVESsyndrome.org