The PHACE Syndrome Community hosts meetings for individuals and families to learn more about the medical complexity of PHACE and LUMBAR syndromes, and to ask questions to the community of physicians familiar with PHACE and LUMBAR.   

Every other year, the PHACE Syndrome Community hosts an in-person conference, allowing individuals to meet face to face. The meeting of this magnitude means so much to those who have never met another person with PHACE syndrome, particularly children. ​​