Run in partnership with the PHACE Syndrome Community.

Overview

PHACE syndrome is a neurocutaneous syndrome characterized by large segmental infantile hemangiomas of the face and scalp in association with congenital anomalies that may affect the posterior fossa of the brain, cerebral and cervical arteries, heart, and/or eyes. LUMBAR syndrome is the lower-body counterpart of PHACE, characterized by large segmental infantile hemangiomas of the lumbosacral, buttock or pelvic regions associated with urogenital, spinal, bony, anorectal, and/or renal abnormalities. Those affected experience a wide range of comorbidities with significant psychosocial impact. We invite proposals for clinical research that improves diagnostic approaches, enhances quality of life, and addresses key aspects of disease burden and management.

Applications may be submitted by either a single investigator or multiple investigators at multiple institutions. A total of $40,000 is available and may be awarded as one large-scale project or as multiple smaller awards, depending on the number and quality of applications received. Equal consideration will be given to projects in either of the two award formats with decisions to be based upon merit and available funds.

Focus

Research should focus on PHACE and/or LUMBAR syndromes. Priority will be given to investigators who have not previously served as the senior investigator on an R01 NIH grant or equivalent, and to studies that include multidisciplinary teams with active roles for early-career investigators. Proposals that meaningfully integrate patient perspectives are strongly encouraged.

Important Details

• Up to $40,000 will be funded to support one large-scale project for up to two years, or as multiple awards for smaller-scale projects
• Application deadline: Thursday, September 17, 2026

We extend our gratitude to Dr. Denise Metry, co-chair of the Infantile and Congenital Hemangiomas subgroup, for raising funds for this new grant program through her successful 2025 Boston Marathon fundraising campaign in support of research on PHACE and LUMBAR syndromes.