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 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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"Resources" on this report.
Copyright 1988, 1989, 1990, 1992, 1999, 2002, 2009
NORD is very grateful to Cynthia A. Moore, MD, PhD, Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, for assistance in the preparation of this report.
Synonyms of Anencephaly
Disorder Subdivisions
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.
Organizations related to Anencephaly
- Abiding Hearts
705 14th Street
Butte MT 59701
Phone #: 406-782-4894
800 #: --
e-mail: abidinghearts@yahoo.com
Home page: N/A
- 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
- Infants Remembered In Silence, Inc. (IRIS)
101 Third Street NW
Faribault MN 55021
Phone #: 507-334-4748
800 #: N/A
e-mail: iris@qwestoffice.net
Home page: http://www.irisRemembers.com
- 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/
- NIH/National Institute of Child Health and Human Development
31 Center Dr
Bethesda MD 20892
Phone #: 301-496-5133
800 #: --
e-mail: N/A
Home page: http://www.nih.gov/hichd/
- National Institute of Neurological Disorders and Stroke (NINDS)
31 Center Drive
Bethesda MD 20892-2540
Phone #: 301-496-5751
800 #: 800-352-9424
e-mail: braininfo@ninds.nih.gov
Home page: http://www.ninds.nih.gov/
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