PHACE Syndrome can be a challenging medical condition. It can be helpful to know you're not alone in the journey. The good news is there's an online community you can join right away for support.
Because of the sensitive nature of the discussions, our Facebook group is a private group, which individuals must ask to join. To be eligible to join:
1. You either must have PHACE Syndrome or be the parent/guardian of a child with PHACE Syndrome.
2. You must answer the questions on the Facebook group prior to joining.
We ask that everyone respect this policy.
In addition to our private Facebook group, board members are available for private, confidential interactions, via email or phone. Please fill out the contact form and let us know if you think you'd benefit from personal support.
By asking to join, you also agree with the following statement: I understand the PHACE Syndrome Community Facebook group is a vehicle for those impacted by this medical condition to share their thoughts and perspectives. Any medical discussions are not to be considered official medical advice. Please be sure to discuss specifics of your or your child's medical issues with your doctor.
To interact with us on our public Facebook page, click here.
To interact with us on our "closed" or private Facebook page, click here.
FACEBOOK DISCLAIMER: While we maintain our "closed" or restricted access page on Facebook, it operates as a product of Facebook Inc., which is constantly changing its privacy policies. We suggest any information you're not comfortable sharing in a public forum to be posted or discussed via our private forum.