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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 1992, 2000
Synonyms of Encephalocele
- Bifid Cranium
- Cephalocele
- Cranial Meningoencephalocele
- Craniocele
- Cranium Bifidum
Disorder Subdivisions
General Discussion
Encephalocele is a rare disorder in which an infant is born with a gap in the skull; that is, a part of one or more of the plates that form the skull does not seal. The membranes that cover the brain (meninges), and brain tissue, protrude through this gap. It is likely thatthis disorder is caused by the failure of the neural tube to close during development of the fetus.
Organizations related to Encephalocele
- AmeriFace
PO Box 751112
Las Vegas NV 89136
Phone #: 702-769-9264
800 #: 888-486-1209
e-mail: info@ameriface.org
Home page: http://www.ameriface.org
- 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
- Children's Craniofacial Association
13140 Coit Road
Suite 517
Dallas TX 75240
Phone #: 214-570-9099
800 #: 800-535-3643
e-mail: contactCCA@ccakids.com
Home page: http://www.ccakids.com
- FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga TN 37401
Phone #: 423-266-1632
800 #: 800-332-2373
e-mail: faces@faces-cranio.org
Home page: http://www.faces-cranio.org
- Forward Face, Inc.
317 East 34th Street
Suite 901A
New York NY 10016
Phone #: 212-684-5860
800 #: 800-393-3223
e-mail: camille@forwardface.org
Home page: http://www.forwardface.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
- Guardians of Hydrocephalus Research Foundation
2618 Avenue Z
Brooklyn NY 11235
Phone #: 718-743-4473
800 #: 800-458-8655
e-mail: ghrf2618@aol.com
Home page: http://www.ghrforg.org/
- Hydrocephalus Association
870 Market Street
Suite 705
San Francisco CA 94102
Phone #: 415-732-7040
800 #: 888-598-3789
e-mail: pip@hydroassoc.org
Home page: http://www.hydroassoc.org
- 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/
- National Hydrocephalus Foundation
12413 Centralia
Lakewood CA 90715-1623
Phone #: 562-924-6666
800 #: 888-857-3434
e-mail: nhf@earthlink.net
Home page: http://www.nhfonline.org
- 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/
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