The PHACE Syndrome Registry has moved to Stanford University, Department of Dermatology!

The Genetic Study and Registry of Hemangiomas and the PHACE Syndrome Registry

Hemangiomas are birthmarks made up of blood vessels that grow during the first year of life. Often, they are benign but sometimes they may occur along with other developmental problems, like anomalies of the brain, eyes, heart or other organs. Two of these conditions are known as the PHACE and LUMBAR syndromes.

The PHACE Syndrome Program at Stanford Children’s Health

Dr. Siegel is the Director of the Stanford Children’s Health PHACE multidisciplinary clinic, which includes expert neurologists, neurosurgeons, cardiologists, cardiothoracic surgeons, neuroradiologists, ophthalmologists, endocrinologists, and geneticists to provide advanced, comprehensive care to children with PHACE.

The PHACE Syndrome Program offers services out of our Dermatology Clinic at the Mary L. Johnson Specialty Services location in Palo Alto.

Interactive Technology for Skin: Community Outreach, Research, and Education (iTS-CORE)

Through informed discussions with stakeholders, including community advisors, teachers, and students, we developed an interactive educational workshop named the Interactive Technology for Skin: Community Outreach, Research, and Education. We hosted several workshops in Stanford Redwood City during the summer of 2022.

Over the next year, we will continue to interview educators in high schools, community organizations, and community health centers. We hope to understand their priorities, barriers they face, and opportunities for education and mentorship. In collaboration with the Stanford Graduate School of Education Center for Teaching and Learning (CTE), we will continue to refine our program based on community needs.

Our goal is to create a novel educational program that supports diversity and inclusion in skin health and skin science education.