CLOVES Syndrome Community Plans to Launch Collaborative Research Network

The CLOVES Syndrome Community has been awarded $450,000 by The Chan Zuckerberg Initiative’s Rare As One Project to expedite research and drive progress for people with this rare disease.

CLOVES Syndrome (Congenital Lipomatous Overgrowth, Vascular Malformations, Epidermal Nevi & Scoliosis/Spinal Issues/Seizures) is a congenital disease caused by a somatic genetic mutation in the PIK3CA gene. Symptoms can vary but often include vascular, skin, spinal, and bone abnormalities and overgrowth.

With funds from the Rare As One Project, the CLOVES Syndrome Community will create a Collaborative Research Network of patients, physicians, scientists, and researchers working together to understand this PIK3CA pathway.

For more information, read the full press release here.