Crouzon Syndrome

Important
It is possible that the main title of the report Crouzon Syndromeis not the name you expected.

Synonyms

Craniofacial Dysostosis
Crouzon Craniofacial Dysostosis
Craniostenosis, Crouzon Type

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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Resources

Children's Craniofacial Association
13140 Coit Road
Suite 517
Dallas
TX
75240
USA
Tel: (214)570-9099
Fax: (214)570-8811
800: (800)535-3643
csmith@ccakids.com
http://www.ccakids.com

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains
NY
10605
Tel: (914)428-7100
Fax: (914)997-4763
800: (888)663-4637
Askus@marchofdimes.com
http://www.marchofdimes.com

FACES: The National Craniofacial Association
P.O. Box 11082
Chattanooga
TN
37401
Tel: (423)266-1632
Fax: (423)267-3124
800: (800)332-2373
faces@faces-cranio.org
http://www.faces-cranio.org

The Arc (a national organization on mental retardation)
1010 Wayne Ave
Suite 650
Silver Spring
MD
20910
Tel: (301)565-3842
Fax: (301)565-3843
800: (800)433-5255
TDD: (817)277-0553
info@thearc.org
http://www.thearc.org/

Forward Face, Inc.
317 East 34th Street
Room 901
New York
NY
10016
Tel: (212)684-5860
Fax: (212)684-5864
800: (800)393-3223
info@forwardface.org
http://www.forwardface.org

Let's Face It (USA)
P.O. Box 29972
Bellingham
WA
98228-1972
USA
Tel: (360)676-7325
faceit@umich.edu
http://www.dent.umich.edu/faceit

AmeriFace
PO Box 751112
Las Vegas
NV
89136
USA
Tel: (702)769-9264
Fax: (702)341-5351
800: (888)486-1209
info@ameriface.org
http://www.ameriface.org

National Association for Parents of Children with Visual Impairments (NAPVI)
P.O. Box 317
Watertown
MA
02472
Tel: (617)972-7441
Fax: (617)972-7444
800: (800)562-6265
napvi@perkins.org
http://www.napvi.org

Alexander Graham Bell Association for the Deaf, Inc.
3417 Volta Place, NW
Washington
D.C.
20007-2778
United States
Tel: (202)337-5220
Fax: (202)337-8314
800: (866)337-5220
info@agbell.org
http://www.agbell.org

Council of Families with Visual Impairment
1155 15th St. NW
Suite 1004
Washington
DC
20005
Tel: (202)465-5081
Fax: (202)465-5085
info@acb.org
http://www.acb.org/

National Craniofacial Foundation
3100 Carlisle Street
Suite 215
Dallas
TX
75204
800: (800)535-3643NIH/National Eye Institute
Building 31 Rm 6A32
31 Center Dr MSC 2510
Bethesda
MD
20892-2510
United States
Tel: (301)496-5248
Fax: (301)402-1065
2020@nei.nih.gov
http://www.nei.nih.gov/

Society for the Rehabilitation of the Facially Disfigured, Inc.
550 First Avenue
New York
NY
10016
Tel: (212)340-5400Crouzon's/Meniere's Support Network
3757 North Catherine Drive
Prescott Valley
AZ
86314-8320
USA
TDD: (800)842-4681
katy@northlink.comNIH/Nat'l Institute on Deafness & Other Communication Disorders Information Clearinghouse
1 Communication Ave
Bethesda
MD
20892-3456
Tel: (301)402-0900
Fax: (301)907-8830
800: (800)241-1044
TDD: (800)241-1105
nidcdinfo@nidcd.nih.gov
http://www.nidcd.nih.gov

Crouzon Support Network
P.O. Box 1272
Edmonds
WA
98020
USA
Tel: (425)672-1697
crouzons-owner@yahoogroups.com
http://www.crouzon.org

Headlines - Craniofacial Support
128 Beesmoor Road
Bristol
Intl
BS36 2JP
United Kingdom
Tel: 44-01454-850557
info@headlines.org.uk
http://www.headlines.org.uk

MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay
WI
54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
800: (877)336-5333
mums@netnet.net
http://www.netnet.net/mums/

Sjældne Diagnoser / Rare Disorders Denmark
Frederiksholms Kanal 2, 3rd Floor
Copenhagen K
1220
Denmark
Tel: 45 33 14 00 10
Fax: 45 33 14 55 09
mail@sjaeldnediagnoser
http://www.raredisorders.dk

Let Them Hear Foundation
1900 University Ave #101
East Palo Alto
CA
94303
Tel: (650)462-3143
Fax: (650)462-3143
800: (877)735-2929
info@letthemhear.org
http://www.letthemhear.org

Perkins School for the Blind
175 North Beacon St.
Watertown
MA
02472
Tel: (617)924-3434
Fax: (617)926-2027
Info@Perkins.org
http://www.Perkins.org

National Consortium on Deaf-Blindness (NCDB)
The Teaching Research Institute
Western Oregon University
345 N. Monmouth Ave.
Monmouth
OR
97361
Tel: (800)438-9376
Fax: (503)838-8150
800: (800)438-9376
TDD: (800)854-7013
info@nationaldb.org
http://www.nationaldb.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

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated: 9/17/2007
Copyright 1987, 1990, 1992, 1999, 2000, 2003, 2007 National Organization for Rare Disorders, Inc.

WebMD Medical Reference from the National Organization of Rare Disorders

Last Updated: September 17, 2007

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