CLOVES Syndrome Community

In 2009, the mother of a child with CLOVES syndrome started a website and an organization, after she realized that no such resources existed for families and people with CLOVES. 

The vision of CLOVES Syndrome Community (CSC) 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.  

CSC 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. CLOVES Syndrome Community is part of the Chan Zuckerberg Initiative’s 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.