Crouzon Support Network, A Program of AmeriFace

The Crouzon Support Network is a non-profit support organization for individuals and family members affected by Crouzon syndrome or other rare disorders characterized by abnormalities of the head and face (craniofacial). Infants with Crouzon syndrome, a rare genetic disorder, may experience premature closure of the fibrous joints between certain bones of the skull (craniosynostosis) and, in some cases, progressive hydrocephalus, a condition in which inhibition of the normal flow of cerebrospinal fluid (CSF) and abnormal widening (dilatation) of certain cavities of the brain (ventricles) may cause accumulation of CSF in the skull and increased pressure on the brain. Affected individuals may also have additional craniofacial abnormalities including widely spaced and/or abnormally prominent eyes (ocular hypertelorism and/or exophthalmos); outward deviation of one of the eyes (divergent strabismus or exotropia); a beak shaped nose; a short upper lip; an abnormally small, underdeveloped upper jaw (hypoplastic maxilla), causing the lower jaw to protrude forward (relative mandibular prognathism); and/or overcrowding of the teeth. Individuals with Crouzon syndrome may also experience visual and/or hearing impairment; vertigo, dizziness, and/or ringing in the ears (Meniere’s disease); abnormal sideways curvature of the spine (scoliosis); and/or other abnormalities. The Crouzon Support Network was established in 1997 and currently has approximately 70 members. The network is dedicated to providing understandable information on Crouzon syndrome; providing support and patient advocacy services; and offering a variety of networking opportunities to affected families, enabling them to exchange information, resources, and mutual support. In addition, the Crouzon Support Network offers a listing of craniofacial clinics throughout the United States and Canada, and provides additional referrals.