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National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Anencephaly 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

  • None

Disorder Subdivisions

  • None

General Discussion

Anencephaly is a disorder involving the incomplete development of major parts or all of the brain. Anencephaly is classified as a neural tube defect (NTD), and that term refers to the incomplete development of the brain, spinal cord, and/or their protective coverings. The neural tube is a narrow sheath that is supposed to fold and to close in the third or fourth weeks of pregnancy, in order to form the brain and spinal cord of the embryo. Anencephaly occurs when the anterior or cephalic head-end of this neural tube fails to close, resulting in the failure of major portions of brain, skull and scalp to form.

Infants with anencephaly are born without both a forebrain (the front part of the brain) and a cerebrum (the thinking and coordinating part of the brain). Often the remaining brain tissue may be exposed, or without protective covering, either bone or skin.

Anencephaly is characterized by the absence of the two hemispheres of the brain. The absent brain tissue is sometimes replaced by a rudimentary brain stem made up of abnormal cystic nerve tissue. Although reflex actions such as breathing and responses to touch or sound may occur, gaining consciousness is almost invariably ruled out.
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Resources

Abiding Hearts
705 14th Street
Butte, MT 59701
USA
Tel: 4067824894
Fax: 4065877197
TDD: 8002233131
Email: abidinghearts@yahoo.com

National Institute of Neurological Disorders and Stroke (NINDS)
31 Center Drive
8A07
Bethesda, MD 20892-2540
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
Email: braininfo@ninds.nih.gov
Internet: http://www.ninds.nih.gov/

Anencephaly Support Foundation
30827 Sifton
Spring, TX 77386
Tel: (281)364-9222
Tel: (888)206-7526
Email: info@asfhelp.com
Internet: http://www.asfhelp.com/asf/home

NIH/National Institute of Child Health and Human Development
31 Center Dr
Building 31, Room 2A32
MSC2425
Bethesda, MD 20892
Tel: (301)496-5133
Fax: (301)496-7101
Internet: http://www.nih.gov/hichd/

Birth Defect Research for Children, Inc.
930 Woodcock Rd
Suite 225
Orlando, FL 32803
USA
Tel: 4078950802
Fax: 4078950824
Email: staff@birthdefects.org
Internet: http://www.birthdefects.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:  3/11/2008
Copyright  1988, 1989, 1990, 1992, 1999, 2002 National Organization for Rare Disorders, Inc.


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