SHOW YOUR PHACE!
Email us three photos to add you or your child to our Show Your PHACE campaign during
PHACE Syndrome Awareness Week.
All featured individuals have PHACE Syndrome.
Click on any one of the awareness posters below to see a larger view of these beautiful PHACES!
Three Ways to Help
We're purely comprised of volunteers, and ALL
donations go directly to helping our cause.
Become a member and join the PHACE Syndrome
If you or your child has PHACE Syndrome, we can't stress
enough the importance of joining the registry. Note: you
do NOT have to give DNA samples if you don't wish.
Fresh PHACE Facts:
30-35% of those with PHACE will have malformations of the brain(structural brain abnormalities) — mainly of the back of the brain called the posterior fossa, or the space at the base of the skull containing the brainstem and cerebellum.
It is not uncommon to have infantile hemangioma of the brain in PHACE approximately 15-18% of those with PHACE will have intracranial hemangioma.
Developmental anomalies of the pituitary gland occur in 15-18% of those with PHACE syndrome. This could lead to growth or endocrine problems.
80-90% of PHACE patients have Arterial Anomalies. This is the most variable and complicated abnormality in PHACE. Each child seems to have their own unique changes in the arteries of the chest, neck and brain. These abnormalities are believed to be the cause of migraine-like headaches.
Complications from severe infantile hemangiomas in PHACE are becoming increasingly less common due to treatment with oral beta blockers. Long term affects can include scarring, impaired vision and damage to hearing.
30% of PHACE patients have the Cardiovascular anomalies which can include coarctation of the aortic arch, aortic arch anomalies and subclavian artery anomalies.
12-15% of PHACE patients have developmental abnormalities of the Eye. Most of the time they occur in the posterior segment of the eye.
March 22-29, 2015 marked the first PHACE Syndrome Awareness week. More than 90 families from around the world contributed photos, helping to raise more awarenes of PHACE Syndrome in a single week than ever before! Click here to see the 'patchwork' of our collective efforts, along with other facts about PHACE.