PHACE Syndrome Registry

We finally received Jayda's registration papers from Texas Children's Hospital today.This means that Jayda will now become one of 250 patients worldwide to be included in the research being conducted by the Texas Children's Hospital/Baylor College of Medicine.This research registry is designed to help clinicians and basic scientists understand the cause of PHACE Syndrome,which may help lead to treatment and prevention.The registry also serves as an educational resource for families who are interested in learning more about this syndrome.