Your Voice Matters: Shaping the Future of PHACE and LUMBAR Research

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 research agenda—from helping identify the questions that matter most to giving feedback on the ideas proposed by doctors and scientists.

This is an important step toward patient-centered research: making sure studies reflect real-life experiences, needs, and hopes of those living with PHACE and LUMBAR.

Stay tuned for updates on how you can share your voice and help guide the next wave of discoveries!