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: info@agbell.org
    Home page: http://www.agbell.org
  • AmeriFace
    PO Box 751112
    Las Vegas NV 89136
    Phone #: 702-769-9264
    800 #: 888-486-1209
    e-mail: info@ameriface.org
    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: csmith@ccakids.com
    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: info@acb.org
    Home page: http://www.acb.org/
  • Crouzon Support Network
    P.O. Box 1272
    Edmonds WA 98020
    Phone #: 425-672-1697
    800 #: --
    e-mail: crouzons-owner@yahoogroups.com
    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: katy@northlink.com
    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: faces@faces-cranio.org
    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: info@forwardface.org
    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: info@headlines.org.uk
    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: info@letthemhear.org
    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: faceit@umich.edu
    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: mums@netnet.net
    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: getinfo@madisonsfoundation.org
    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: Askus@marchofdimes.com
    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: nidcdinfo@nidcd.nih.gov
    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: 2020@nei.nih.gov
    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: napvi@perkins.org
    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: info@nationaldb.org
    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: Info@Perkins.org
    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: mail@sjaeldnediagnoser
    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: info@thearc.org
    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