International Phace Syndrome Awareness Week – March 23-29, 2025

History of International Phace Syndrome Awareness Week

PHACE syndrome is a rare disease that affects several body systems. It is distinguished by several abnormalities that co-occur with a higher than expected frequency. PHACE is an acronym for posterior fossa anomalies, hemangioma, arterial anomalies, cardiac anomalies, and eye anomalies. It comes from the initials of the disorder’s most common signs and symptoms.

The disease is much more common in girls than in boys. However, specific symptoms and their severity can vary significantly from person to person. Most affected children will not exhibit all the major symptoms associated with the disorder. Some children may experience mild problems associated with the disease, while others may develop serious complications that affect their quality of life. The main symptoms of PHACE are anomalies of the aortic arch; narrowing, abnormal growth, or absence of a major cerebral artery; the presence of the trigeminal artery; abnormalities of the cerebellum; blood clots in the blood vessels around the heart and brain; abnormal structure of the back of the eye and sternum; gaps in the wall between the left and right ventricles of the heart; and anomalies in the pituitary and thyroid glands.

The most conspicuous sign of PHACE syndrome is often a hemangioma, an overgrowth of blood vessels that may look like a red, purple, or blue mole. Hemangiomas often appear on the face, head, or neck. They may be small or barely noticeable at birth and become apparent and grow, sometimes rapidly, within weeks or months of life. The exact cause of PHACE syndrome is currently unknown. International PHACE Syndrome Awareness Week was established by the PHACE Syndrome Community and The PHACES Foundation of Canada to create awareness about the syndrome and help families affected by the disease receive appropriate medical care.