Phace Syndrome Community Inc

“Expenses advertising and promotion 1,135 office expenses 115 technology and website costs 1,398 travel and meetings 1,302 conference costs 661 bank & credit card fees 582 business expenses 1,122 total 6,315”

“The phace syndrome community (psc) educates families through virtual meetings with guest speakers of topics pertaining to a phace syndrome diagnosis. The meetings are geared towards individuals of all ages, and allows for individuals to learn more about research, and other aspects of phace syndrome. The meetings also act as a support program for families who feel isolated and alone. In 2022, the psc hosted a one-day virtual conference for all families and individuals with phace syndrome. Guest physicians presented on all aspects of phace syndrome, allowing meeting participants to engage in question and answer sessions. There were 50 families registered from the united states, australia, and ireland.”

“The phace syndrome community (psc)supports research through attendance at the annual pediatric dermatology research alliance (pedra) conference where phace syndrome is a topic in a working group of physician scientists. The psc attends the annual medical and scientific advisory board meeting. This meeting is a virual meeting, with physicians of all specialties, who have an interest in, and treat patients with phace syndrome. The psc supports research through the phace syndrome registry at stanford.”

“The phace syndrome community (psc) connects and educates 900 plus families and individuals through social media channels, the psc website and closed online support groups. Relevant information is posted and shared, keeping the phace syndrome community informed of current research, treatment, and best practice for care.”