Join the PHACE Registry

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

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

 

What is the study about?

Hemangiomas are birthmarks made up of blood vessels that grow during the first year of life. Infantile hemangiomas are often called strawberry birthmarks. 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.

PHACE stands for Posterior fossa anomalies, hemangiomas, arterial anomalies, cardiac anomalies and eye anomalies.

LUMBAR stands for lower body hemangioma and other cutaneous defects, Urogenital anomalies, Myelopathy, and Bone deformities.

What are the goals of the registry?

  1. Learn about hemangiomas, PHACE, and LUMBAR and how they affect individuals over time
  2. Understand the genetic cause of hemangiomas, PHACE and LUMBAR to determine why they occur, and how to improve treatment.

 

If you would like to be a part of the study, please contact us!

 

Mailing address

Dr. Dawn Siegel
Department of Dermatology

Stanford University – Dermatology

455 Broadway Street | Discovery Hall

Room 143, MC 8843

Redwood City, California 94063


Email: phaceregistry@stanford.edu

Phone: (650) 497-6397

Resources

We are grateful to the PHACE Syndrome Community and all the families who have participated in our research.

Contact Us

Please send us a message if you are interested in joining the registry, or if you have any questions!

 
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