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You are not alone.

Find support from others in the PHACE Syndrome Community  

Navigating through a new diagnosis is hard, and going it alone makes it harder. The many questions you may have, understanding the new medical terminology, wanting to get the most out of your physician appointments, and explaining PHACE to your child are some of the many challenges you may have. 

Knowing there are others for you to connect with makes the PHACE syndrome diagnosis less scary and less overwhelming.

As a parent, connecting with other families is important for you, to know there are others who understand what you are going through.


The life-long bond children make when they meet other children with PHACE syndrome is important for them as they navigate through their own diagnosis.


Meeting someone who "looks like you" can be so important to an individual with a PHACE syndrome diagnosis.


This is why the PHACE Syndrome Community is here for you. 

Navigate through the many ways you can connect with others. We offer Zoom virtual meetings, a closed Facebook group, a bi-ennial National Conference, member stories, and the PHACE Syndrome Community quarterly newsletter.


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