Welcome to the PHACE Syndrome Community (PSC)!
The PSC is a patient advocacy organization founded to:
Raise awareness of PHACE Syndrome.
Build community for all affected.
Support research about PHACE Syndrome.
Be a key source of medical information and latest advancements.
We help families and individuals navigate through their journey with PHACE syndrome, support research that can help to determine the cause of PHACE syndrome, and find better treatment for those with PHACE syndrome.
A PHACE syndrome diagnosis can be scary and confusing. There is new terminology to learn, time spent finding the most informed medical team and feelings of isolation. The PSC has resources to help make it a bit easier for you.
If you haven't already, consider joining our closed Facebook group. This is a great way to ask questions of others with PHACE syndrome or parents of children with PHACE syndrome.
The PSC hosts informative Zoom meetings as well as in person events. All meetings and events will be posted here.
The PHACE Syndrome Registry is an easy way to participate in research, helping to find the cause of PHACE syndrome and supporting researchers who have an interest in PHACE syndrome.
The Care Guidelines and the paper Facing PHACE Twenty-Five Years Later are two of the many resources available from the PHACE Syndrome Community.
The PSC's Youtube channel has playlists from past meetings, research updates, and other helpful media for a better understanding of PHACE syndrome.
We are only an email or a phone call away! We can be reached at 678-744-3971 or by email at firstname.lastname@example.org
We are glad you are here!
The PHACE Syndrome Community
The PSC relies on donations to support all those in the PHACE syndrome community, patients, caregivers, families and researchers. Please consider being a supporter of the PSC!