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The PHACE Syndrome Community is a United States 501c3 non-profit dedicated to serving those affected with PHACE and their surrounding family, friends, and community.  Its leadership, officers, and members are all volunteers and take no compensation.  The organization prospers through the generosity of the community.  We encourage all to participate and make whatever time or resource contribution that is possible so you can make a difference for people living with PHACE Syndrome.


The mission of the PHACE Syndrome Community is:

  • Support research and advocacy around the cause and treatment of PHACE.

  • Create and support the community of affected families via social networks, newsletters, an informational website, doctor database, and other information which can enable parents to successfully treat their children.

  • Sponsor conventions, meetings, and gatherings for the community and the doctors supporting the community.

  • Perform fundraising to support the mission.

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