Project FAVA

Project FAVA is a 501(c)(3) nonprofit patient advocacy organization dedicated to supporting individuals and families affected by fibro-adipose vascular anomaly (FAVA). Established in 2018 by a patient and his family, the organization focuses on raising awareness, providing educational resources, and fostering connections between patients, clinicians, and researchers. Project FAVA maintains a global patient registry to facilitate clinical research and has been a key partner in trials for targeted therapies, including PI3K inhibitors such as alpelisib. The organization's mission is to empower the FAVA community and advance the development of more effective, less invasive treatment options for this rare vascular condition.