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

Craniosynostosis, Primary


Synonyms of Craniosynostosis, Primary
  • Craniostenosis
  • CSO

Disorder Subdivisions

  • Kleeblattschadel Deformity
  • Plagiocephaly
  • Scaphocephaly
  • Trigonocephaly
  • Turricephaly


General Discussion
Primary Craniosynostosis is a rare disorder of the skull that may be inherited as an autosomal dominant or autosomal recessive genetic trait. Premature closure of the bones (sutures) in the skull result in an abnormally shaped head. The severity of symptoms and shape of the skull depend on which skull bones are prematurely closed. This disorder is present at birth.

Organizations related to Craniosynostosis, Primary
  • 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
  • American Association of Neurological Surgeons
    5550 Meadowbrook Drive
    Rolling Meadows IL 60008-3852
    Phone #: 847-378-0500
    800 #: 888-566-2267
    e-mail: info@aans.org
    Home page: http://www.NeurosurgeryToday.org
  • Birth Defect Research for Children
    930 Woodcock Rd
    Orlando FL 32803
    Phone #: 407-895-0802
    800 #: --
    e-mail: staff@birthdefects.org
    Home page: http://www.birthdefects.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
  • 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
  • Guardians of Hydrocephalus Research Foundation
    2618 Avenue Z
    Brooklyn NY 11235
    Phone #: 718-743-4473
    800 #: 800-458-8655
    e-mail: GHRF2618@aol.com
    Home page: N/A
  • 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
  • Hydrocephalus Association
    870 Market Street
    San Francisco CA 94102
    Phone #: 415-732-7040
    800 #: 888-598-3789
    e-mail: pip@hydroassoc.org
    Home page: http://www.hydroassoc.org
  • 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/
  • National Craniofacial Foundation
    3100 Carlisle Street
    Dallas TX 75204
    Phone #: --
    800 #: 800-535-3643
    e-mail: N/A
    Home page: N/A
  • National Hydrocephalus Foundation
    12413 Centralia
    Lakewood CA 90715-1623
    Phone #: 562-924-6666
    800 #: 888-857-3434
    e-mail: nhf@earthlink.net
    Home page: http://www.nhfonline.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