Hi there, Hayley, Hannah’s mom here. Nearly three years ago, receiving Hannah’s diagnosis felt overwhelming and scary. But now? Life is oh so sweet—with a side of sassy. It’s a part of our family’s story, but it doesn’t define Hannah or us. We’re great. We’ve built a strong medical team around her—one we truly trust and believe in. The best advice we received was not to wrap her in bubble wrap, but to let her live her life. And she does—fearlessly. She’ll let us know when she

Our daughter was diagnosed with PHACE (P, H, A) at one month old in March, 2020. When she was born she had slight bruising on her face - our pediatrician said that could happen but everything looked good and there was no worry. Over the next few weeks the bruise grew into redness on the left side of her face and her left eye began to swell. We thought maybe she had a port wine birthmark, but our pediatrician didn’t think that’s what she had. After her three week appointment,

Mark your calendars! The next PHACE Syndrome Community Family Meeting will take place Friday, June 25 through Saturday, June 26, 2027. The location is still being finalized, but it will be in a central U.S. location to make travel easier for families across the country. This gathering will be especially meaningful—it marks 20 years since the very first PHACE research and family meeting held in Houston, Texas. We’re planning a special anniversary celebration, featuring a line-

Thanks to the incredible support of the PHACE Syndrome Community, the Pediatric Dermatology Research Alliance (PeDRA), and many generous friends, last year’s Boston fundraiser was a wonderful success! Because of your efforts, PeDRA will be accepting applications this summer for two $20,000 research grants focused specifically on PHACE and LUMBAR syndromes. Even more exciting, the PHACE Syndrome Community (PSC) Board of Directors is exploring new ways for families to shape the