PHACE REGISTRY

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Join the PHACE Registry
Timeline - Ongoing

 

This registry is for people diagnosed with PHACE,  LUMBAR and other, hemangioma-related syndromes, and performs a genetic analysis. Please note: you do NOT have to provide DNA samples to join the registry. The researchers may ask, but you may decline. Every piece of information helps the research team learn more about PHACE.
 

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.


Doctors tell us this one of the most important thing families can do to help support research and find the answers we are all seeking. 

 

Learn more about the PHACE Registry