Our Consortium

Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium aims to transform care for patients living with syndromic craniosynostosis (CS). ACT assembles leading craniofacial care centers across the US to create a multidisciplinary research ecosystem focused on carrying out the prospective multisite clinical studies on syndromic CS, providing career development for craniofacial researchers, and supporting innovative clinical projects. Together with craniofacial patient advocacy groups, ACT will advance care for syndromic CS and provide high-impact research to support this rare disease population.