PHACE Syndrome Program

The PHACE Syndrome Program at Stanford Medicine Children’s Health brings together pediatric experts from multiple specialties to care for the collection of disorders that make up PHACE, a rare condition that was identified fairly recently. Almost all children with PHACE syndrome have a large hemangioma, a red or purplish-blue birthmark on her or his face, head, or neck as an infant, and usually one or two other anomalies. With PHACE syndrome, no two children have exactly the same experience. Symptoms can range from mild to severe, with a child having one or more of the following anomalies.

PHACE stands for:

• Posterior fossa – brain malformations that are present at birth
• Hemangioma – a birthmark that’s caused by an overgrowth of blood vessels on the skin of the face, head, or neck
• Arterial lesions – abnormalities of the blood vessels in the neck or head
• Cardiac abnormalities/aortic coarctation – malformation of the heart or the blood vessels that are attached to the heart
• Eye abnormalities – one or several eye irregularities affecting the nerves, iris, or retina

Why choose Stanford Medicine Children’s Health for PHACE

• Expert, coordinated care. Because PHACE can affect several areas of the body, we bring together a large team of pediatric specialists from dermatology, cardiology, endocrinology, neurology, neurosurgery, interventional radiology, neuroradiology, ear/nose/throat (ENT), and genetics. This multidisciplinary team works as one to determine and carry out the best treatment plan for your child.
• Convenient multi-faceted evaluation all in one day. In our clinic, you will see several experts one after another, all in one day or a few subsequent days. At the end of the evaluation, we’ll discuss findings, care options, and next steps.
• Tailored care to fit your child’s needs. Your child’s PHACE syndrome is unique. That’s why we develop a comprehensive care plan tailored to her or his needs, always considering the whole child when determining treatment.
• Leaders in PHACE research. We house the PHACE Syndrome registry for people diagnosed with PHACE and other hemangioma-related syndromes. As part of this community, we provide access to new studies to help find the cause of PHACE, which ultimately improves care.