Anencephaly

National Organization for Rare Disorders, Inc.

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

Disorder Subdivisions

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General Discussion

Anencephaly is a disorder involving the incomplete development of major parts 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 during the third and fourth weeks of pregnancy, in order to form the brain and spinal cord of the embryo. Anencephaly occurs when the head (cephalic) 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 rudimentary brain tissue may be exposed, without the protective covering of either bone or skin. Although reflex actions such as breathing and responses to touch or sound may occur, gaining consciousness is almost invariably ruled out.

Resources

Abiding Hearts, Inc.
P.O. Box 904
Libby, MT 59923
USA
Tel: (406)923-4416
Email: hearts@lclink.com

National Institute of Neurological Disorders and Stroke (NINDS)
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/

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.nichd.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: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

Infants Remembered In Silence, Inc. (IRIS)
101 Third Street NW
Faribault, MN 55021
Tel: (507)334-4748
Fax: (507)334-4748
Email: support@irisremembers.com
Internet: http://www.irisRemembers.com

Fetal Hope Foundation
9786 S Holland Street
Littleton, CO 80127
USA
Tel: (303)932-0553
Tel: (877)789-4673
Email: info@fetalhope.org
Internet: http://www.fetalhope.org

Share Pregnancy & Infant Loss Support, Inc.
402 Jackson Street
Saint Charles, MO 63301
Tel: (636)947-6164
Fax: (636)947-7486
Tel: (800)821-6819
Email: info@nationalshare.org
Internet: http://www.nationalshare.org

For a Complete Report

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

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