Patient Advocacy Groups

Born a Hero Research Foundation

Our mission is to accelerate innovation and research to improve the quality of life for patients with FGFR syndromes.

CAPPKIDS

CAPPS (Craniosynostosis And Positional Plagiocephaly Support) supports and educates families with craniosynostosis and positional plagiocephaly. CAPPS was started by parents and is dedicated to connecting patients and parents with healthcare providers to ensure that patients receive the best available multidisciplinary care in the most timely manner.

Children's Craniofacial Association

Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions.