PHACE Syndrome Community

The PSC supports families with a PHACE Syndrome diagnosis, which is the uncommon association between large infantile hemangiomas, usually of the face, and birth defects of the brain, heart, eyes, skin and/or arteries. Additionally, the organization supports a PHACE syndrome registry, and research which will answer questions about PHACE, and treatment options for patients.

PHACE is an acronym that stands for the medical names of the parts of the body it often impacts:

P – Posterior fossa abnormalities and other structural brain abnormalities
H – Hemangioma(s) of the cervical facial region
A – Arterial cerebrovascular anomalies
C – Cardiac defects, aortic coarctation and other aortic abnormalities
E – Eye anomalies