HI there! I'm sorry that I don't really have any information to offer but I just wanted to suggest that maybe you could email one of the PHACE experts on the panel here??? Good luck on your search for answers and more information. I think there may be people/families on here who might be able to help you in this way. This site is a great resource. I will check with one of the other Moms I have met on here because she may be more aware of a network of children with PHACES and maybe some adults too. I'll post more later if I find anything out. Have a good night!