PHACE Syndrome Community aims to:
- Build community.
- Raise awareness.
- Share medical information
- Support research.
PHACE Syndrome is the uncommon association between large infantile hemangiomas, usually of the face, and birth defects of the brain, heart, eyes, skin and/or arteries. It 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
Additionally, new discoveries lead doctors to believe LUMBAR Syndrome is also related.
One of the reasons so little is known about PHACE Syndrome is because so little monies have been raised to conduct research. We aim to change that, and greatly appreciate your help.
PHACE Syndrome can be challenging. If you or your child has been diagnosed, please consider becoming a part of our group, online forum, or connecting with another family in person.
Due to COVID-19, the PSC postponed the 2020 biennial family conference, which was to be held on June 19-20, 2020 in San Francisco, Calif. An announcement for the 2022 will be made in the future.
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