Crouzon Syndrome / Disease

Diseases & Conditions

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

Crouzon Syndrome

Synonyms of Crouzon Syndrome

Craniofacial Dysostosis
Craniostenosis, Crouzon Type
Crouzon Craniofacial Dysostosis

Disorder Subdivisions

Oxycephaly-Acrocephaly
Virchow's Oxycephaly

General Discussion
Crouzon syndrome is a rare genetic disorder that may be evident at birth (congenital) or during infancy. The disorder is characterized by distinctive malformations of the skull and facial (craniofacial) region. Such abnormalities may vary greatly in range and severity from case to case, including among affected family members. However, in most infants with Crouzon syndrome, the fibrous joints between certain bones of the skull (cranial sutures) close prematurely (craniosynostosis). In addition, facial abnormalities typically include unusual bulging or protrusion of the eyeballs (proptosis) due to shallow eye cavities (orbits); outward deviation of one of the eyes (divergent strabismus or exotropia); widely spaced eyes (ocular hypertelorism); and a small, underdeveloped upper jaw (hypoplastic maxilla), with protrusion of the lower jaw (relative mandibular prognathism).

In some instances, Crouzon syndrome is inherited as an autosomal dominant trait. In other cases, affected individuals have no family history of the disease. In such instances, Crouzon syndrome is thought to result from new genetic changes (mutations) that occur randomly for unknown reasons (sporadically).
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Organizations related to Crouzon Syndrome

Alexander Graham Bell Association for the Deaf, Inc.
3417 Volta Place, NW
Washington D.C. 20007-2778
Phone #: 202-337-5220
800 #: 866-337-5220
e-mail: [email protected]
Home page: http://www.agbell.org
AmeriFace
PO Box 751112
Las Vegas NV 89136
Phone #: 702-769-9264
800 #: 888-486-1209
e-mail: [email protected]
Home page: http://www.ameriface.org
Children's Craniofacial Association
13140 Coit Road
Dallas TX 75240
Phone #: 214-570-9099
800 #: 800-535-3643
e-mail: [email protected]
Home page: http://www.ccakids.com
Council of Families with Visual Impairment
1155 15th St. NW
Washington DC 20005
Phone #: 202-465-5081
800 #: --
e-mail: [email protected]
Home page: http://www.acb.org/
Crouzon Support Network
P.O. Box 1272
Edmonds WA 98020
Phone #: 425-672-1697
800 #: --
e-mail: [email protected]
Home page: http://www.crouzon.org
Crouzon's/Meniere's Support Network
3757 North Catherine Drive
Prescott Valley AZ 86314-8320
Phone #: --
800 #: --
e-mail: [email protected]
Home page: N/A
FACES: The National Craniofacial Association
P.O. Box 11082
Chattanooga TN 37401
Phone #: 423-266-1632
800 #: 800-332-2373
e-mail: [email protected]
Home page: http://www.faces-cranio.org
Forward Face, Inc.
317 East 34th Street
New York NY 10016
Phone #: 212-684-5860
800 #: 800-393-3223
e-mail: [email protected]
Home page: http://www.forwardface.org
Headlines - Craniofacial Support
128 Beesmoor Road
Bristol Intl BS36 2JP
Phone #: 44--014-54-850557
800 #: N/A
e-mail: [email protected]
Home page: http://www.headlines.org.uk
Let Them Hear Foundation
1900 University Ave #101
East Palo Alto CA 94303
Phone #: 650-462-3143
800 #: 877-735-2929
e-mail: [email protected]
Home page: http://www.letthemhear.org
Let's Face It (USA)
P.O. Box 29972
Bellingham WA 98228-1972
Phone #: 360-676-7325
800 #: --
e-mail: [email protected]
Home page: http://www.dent.umich.edu/faceit
MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: [email protected]
Home page: http://www.netnet.net/mums/
Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: [email protected]
Home page: http://www.madisonsfoundation.org
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-428-7100
800 #: 888-663-4637
e-mail: [email protected]
Home page: http://www.marchofdimes.com
NIH/Nat'l Institute on Deafness & Other Communication Disorders Information Clearinghouse
1 Communication Ave
Bethesda MD 20892-3456
Phone #: 301-402-0900
800 #: 800-241-1044
e-mail: [email protected]
Home page: http://www.nidcd.nih.gov
NIH/National Eye Institute
Building 31 Rm 6A32
Bethesda MD 20892-2510
Phone #: 301-496-5248
800 #: --
e-mail: [email protected]
Home page: http://www.nei.nih.gov/
National Association for Parents of Children with Visual Impairments (NAPVI)
P.O. Box 317
Watertown MA 02472
Phone #: 617-972-7441
800 #: 800-562-6265
e-mail: [email protected]
Home page: http://www.napvi.org
National Consortium on Deaf-Blindness (NCDB)
The Teaching Research Institute
Monmouth OR 97361
Phone #: 800-438-9376
800 #: 800-438-9376
e-mail: [email protected]
Home page: http://www.nationaldb.org
National Craniofacial Foundation
3100 Carlisle Street
Dallas TX 75204
Phone #: --
800 #: 800-535-3643
e-mail: N/A
Home page: N/A
Perkins School for the Blind
175 North Beacon St.
Watertown MA 02472
Phone #: 617-924-3434
800 #: N/A
e-mail: [email protected]
Home page: http://www.Perkins.org
Sj?ldne Diagnoser / Rare Disorders Denmark
Frederiksholms Kanal 2, 3rd Floor
Copenhagen K None 1220
Phone #: 45 -33 -14 00 10
800 #: N/A
e-mail: [email protected]
Home page: http://www.raredisorders.dk
Society for the Rehabilitation of the Facially Disfigured, Inc.
550 First Avenue
New York NY 10016
Phone #: 212-340-5400
800 #: --
e-mail: N/A
Home page: N/A
The Arc (a national organization on mental retardation)
1010 Wayne Ave
Silver Spring MD 20910
Phone #: 301-565-3842
800 #: 800-433-5255
e-mail: [email protected]
Home page: http://www.thearc.org/

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ? (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html