National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Anencephaly is not the name you expected.
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.
Abiding Hearts, Inc.
P.O. Box 904
Libby, MT 59923
National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda, MD 20824
NIH/National Institute of Child Health and Human Development
31 Center Dr
Building 31, Room 2A32
Bethesda, MD 20892
Birth Defect Research for Children, Inc.
800 Celebration Ave, Suite 225
Orlando, FL 34747
MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Infants Remembered In Silence, Inc. (IRIS)
101 Third Street NW
Faribault, MN 55021
Fetal Hope Foundation
9786 S Holland Street
Littleton, CO 80127
Share Pregnancy & Infant Loss Support, Inc.
402 Jackson Street
Saint Charles, MO 63301
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