PHACE-TO-PHACE

Attending a PHACE-to-PHACE virtual meeting is a chance to learn more about PHACE syndrome, and the topics which families, just like you, are interested in learning more about, or discussing in person with other families and individuals. 

Each meeting is one hour in length, and is held through Zoom. 

Pre-registration is required. The Zoom meeting link will be sent after registration is complete.

The meetings are free to attend. 

The PHACE Syndrome Community is always interested in hearing your topic ideas. Please email your ideas to info@phacesyndromecommunity.org

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Virtual Monthly Meet-ups

Adult Meet-up

Zoom meetings will be held on the fourth Tuesday of the month.

Time: 7:00 – 8:00 pm eastern time

Meet other adults with a PHACE/S syndrome diagnosis, and share your knowledge, or be supportive to a newly diagnosed individual.

Register here for the series

 

Parent Meet-up

Zoom meetings will be held on the fourth Tuesday of the month

Time: 8:15 - 9:15 pm eastern time

Meet other parents of children with a PHACE/S syndrome diagnosis, and share your knowledge, or be supportive to a new parent navigating through their child’s diagnosis.

Register here for the series

Teen Meet-up

Zoom meetings will be held on the fourth Monday of the month

Time: 8:00 -9:00 pm eastern time

Meet other teens with a PHACE/S syndrome diagnosis, and/or their siblings. Online games, chat time, and hangout with others around the country (maybe even the world!)

Register here for the series

 

Past Meeting Schedule

April 20, 2022 @8:00 pm Eastern Time

PSC Volunteer Opportunity

Join current PSC Board of Directors via Zoom to learn more about what it is like to serve on the PSC board. The PSC is seeking board members and committee members to help with governance and operational input. Help the PSC to continue to grow and serve the PHACE syndrome community. 

April 12, 2022 @8:00 pm Eastern Time

New Parent Meet-up

It is very difficult to receive a new diagnosis of something you never heard about! We encourage all parents of children recently diagnosed with PHACE Syndrome to register for the upcoming PHACE-to-PHACE and meet other parents. There were will be parents of older children on the call to answer questions.  

April 5 2022 @8:00 pm Eastern Time

Teen Talk

Join in conversation with other teens, and set the framework for the PHACE Syndrome Community to provide programing to address the needs of those aged 13-18. These meet-ups will not be recorded; we encourage teens to register for all of the upcoming teen talk meet-ups.

March 21, 2022 @8:30 pm Eastern Time

Research Talk with Dr. Dawn Siegel, Stanford University

Dr. Siegel will be discussing current research, and future projects which will benefit the PHACE syndrome community.

View the playback 

February 23, 2022 @8:00 pm Eastern Time

Understanding IEP/504 Plans

Join in the conversation with other parents and learn the difference between an IEP (Individual Education Plan) and 504 plan, and how to advocate for your child's educational needs.  

 

February 16, 2022 @8:00 pm Eastern Time
Photovoice Project - Do you take pictures?
Learn about this study and how easy it is to get involved. 

January 17, 2022 @8:00 pm Eastern Time

Teen Talk

Join in conversation with other teens, and set the framework for the PHACE Syndrome Community to provide programing to address the needs of those aged 13-18. These meet-ups will not be recorded; we encourage teens to register for the upcoming meet-ups.

 

December 16, 2021 @12 noon Eastern Time

Research: Understanding the Importance of Participating in Research

Join Dr. Dawn Siegel, Stanford Medical Center and Dr. Anna Kerr, Ohio University as they discuss how research can benefit discoveries in PHACE syndrome.

View the playback.