To Top
0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Crouzon Support Network, A Program of AmeriFace


P.O. Box 751112
Las Vegas Las Vegas, NV 89136 USA





800 Number


Email Address

[email protected]


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.

Please Note

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.