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

When your child has PHACE, it’s understandable to worry about stroke. I wanted to share 2 recent studies of children with PHACE that looked closely at their brain and neck blood vessels over years. The take-home message is this: the vessels often look unusual and can change over time, but strokes in childhood are rare . The newest PHACE study The first study is the most recent, just published in February 2026 . It’s an extension of the  “10 years of age and older” long‑term o

Dear friends,   On April 21, 2025, I will be running the Boston Marathon to raise funds for research on PHACE and LUMBAR syndromes. This...

Happy New Year, everyone! Can you believe it's already February 2025? Time certainly flies! I have two exciting updates to share with you...

Hello friends! Want to share this brand-new study, which found that statins, drugs commonly used to lower cholesterol in adults, might be...

I am excited to start the “PHACE/LUMBAR research” blog! The purpose of this blog is to periodically share interesting things with you all...

Story by Claire's mom, Amy Hello everyone! I’m Claire’s mom, Amy. I  had a regular pregnancy, Claire was a full term baby.  When she was...

By Whitney Pacheco, PHACE Syndrome Community Board of Director The PSC’s National Conference last June was where I shared my family’s...