NORD's
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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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a medical condition, always seek the advice of your physician or other qualified health
professional. NORD's reports provide a brief overview of rare diseases. For more specific
information, we encourage you to contact your personal physician or the agencies listed as
"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, Inc.
P.O. Box 904
Libby MT 59923
Phone #: 406-923-4416
800 #: --
e-mail: hearts@lclink.com
Home page: N/A
- Birth Defect Research for Children, Inc.
800 Celebration Ave, Suite 225
Orlando FL 34747
Phone #: 407-566-8304
800 #: --
e-mail: staff@birthdefects.org
Home page: http://www.birthdefects.org
- Fetal Hope Foundation
9786 S Holland Street
Littleton CO 80127
Phone #: 303-932-0553
800 #: 877-789-4673
e-mail: info@fetalhope.org
Home page: http://www.fetalhope.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- Infants Remembered In Silence, Inc. (IRIS)
101 Third Street NW
Faribault MN 55021
Phone #: 507-334-4748
800 #: N/A
e-mail: support@irisremembers.com
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
Building 31, Room 2A32
MSC2425
Bethesda MD 20892
Phone #: 301-496-5133
800 #: --
e-mail: N/A
Home page: http://www.nichd.nih.gov/
- National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda MD 20824
Phone #: 301-496-5751
800 #: 800-352-9424
e-mail: me20t@nih.gov
Home page: http://www.ninds.nih.gov/
- Share Pregnancy & Infant Loss Support, Inc.
402 Jackson Street
Saint Charles MO 63301
Phone #: 636-947-6164
800 #: 800-821-6819
e-mail: info@nationalshare.org
Home page: http://www.nationalshare.org
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