The vision of CLOVES Syndrome Community (CSC) is an improved quality of life for those living with CLOVES syndrome, an ultra-rare, progressive, multi-system disease.
Their mission is to support, educate, empower and improve the lives of those affected by CLOVES syndrome. CLOVES Syndrome Community aims to accelerate treatment options, increase the scientific and medical knowledge base, and expand opportunities for an improved quality of life for people with CLOVES and PIK3CA related overgrowth spectrum (PROS) conditions. Its collaborative approach focuses on people with CLOVES/PROS and their caregivers, physicians, scientists, and researchers, to work collaboratively on understanding the PIK3CA pathway in this disease. People with rare diseases and patient advocates are critical to understanding the day-to-day experience of living with a rare disease. They are the experts in their disease. This wealth of knowledge must be considered and included to move safe and effective treatments forward. More info at https://clovessyndrome.org.
