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.

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"This is where the magic happens", a quote from a mom of a 6 year old who attended an in person meeting. 

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The opposite years of the two day in-person meeting, the PHACE Syndrome Community hosts a one day virtual meeting. This meeting allows individuals and families to attend a meeting filled with sessions that answer the many questions they have. The virtual meeting allows families to interact with physicians and one another through a virtual platform.