Encephalocele

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Encephalocele

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Encephalocele is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • Bifid Cranium
  • Cephalocele
  • Cranial Meningoencephalocele
  • Craniocele
  • Cranium Bifidum

Disorder Subdivisions

  • None

General Discussion

Encephalocele is a rare disorder in which an infant is born with a gap in the skull; that is, a part of one or more of the plates that form the skull does not seal. The membranes that cover the brain (meninges), and brain tissue, protrude through this gap. It is likely thatthis disorder is caused by the failure of the neural tube to close during development of the fetus.

Resources

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

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

National Hydrocephalus Foundation
12413 Centralia Rd.
Lakewood, CA 90715-1653
USA
Tel: (562)924-6666
Fax: (562)924-6666
Tel: (888)857-3434
Email: nhf@earthlink.net
Internet: http://www.nhfonline.org

Forward Face, Inc.
333 East 30th Street, Lobby Unit
New York, NY 10016
Tel: (212)263-6656
Fax: (212)263-7534
Tel: (800)393-3223
Email: info@forwardface.org
Internet: http://www.forwardface.org

AmeriFace
Post Office Box 751112
Limekiln, PA 19535
USA
Tel: (702)769-9264
Fax: (702)341-5351
Tel: (888)486-1209
Email: info@ameriface.org
Internet: http://www.ameriface.org

Guardians of Hydrocephalus Research Foundation
2618 Avenue Z
Brooklyn, NY 11235
Tel: (718)743-4473
Fax: (718)743-1171
Tel: (800)458-8655
Email: ghrf2618@aol.com
Internet: http://www.ghrforg.org/

Hydrocephalus Association
870 Market Street
Suite 955
San Francisco, CA 94102
USA
Tel: (415)732-7040
Fax: (415)732-7044
Tel: (888)598-3789
Email: info@hydroassoc.org
Internet: http://www.hydroassoc.org

NIH/National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981
Email: me20t@nih.gov
Internet: http://www.ninds.nih.gov/

Birth Defect Research for Children, Inc.
800 Celebration Ave, Suite 225
Orlando, FL 34747
USA
Tel: (407)566-8304
Fax: (407)895-0824
Email: staff@birthdefects.org
Internet: http://www.birthdefects.org

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Internet: http://rarediseases.info.nih.gov/GARD

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:  3/8/2008
Copyright  1992, 2000 National Organization for Rare Disorders, Inc.

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