Encephalocele

Synonyms

• Bifid Cranium
• Cephalocele
• Cranial Meningoencephalocele
• Craniocele
• Cranium Bifidum

Disorder Subdivisions

• None

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.

Resources

Children's Craniofacial Association

13140 Coit Road

Suite 517

Dallas, TX 75240

USA

Tel: (214)570-9099

Fax: (214)570-8811

Tel: (800)535-3643

Email: contactCCA@ccakids.com

Internet: http://www.ccakids.com



FACES: The National Craniofacial Association

PO Box 11082

Chattanooga, TN 37401

Tel: (423)266-1632

Fax: (423)267-3124

Tel: (800)332-2373

Email: faces@faces-cranio.org

Internet: http://www.faces-cranio.org



National Hydrocephalus Foundation

12413 Centralia Rd.

Lakewood, CA 90715-1653

USA

Tel: (562)924-6666

Fax: (562)924-6666

Tel: (888)857-3434

Email: nhf@earthlink.net

Internet: http://www.nhfonline.org



Forward Face, Inc.

333 East 30th Street, Lobby Unit

New York, NY 10016

Tel: (212)263-6656

Fax: (212)263-7534

Tel: (800)393-3223

Email: info@forwardface.org

Internet: http://www.forwardface.org



AmeriFace

Post Office Box 751112

Limekiln, PA 19535

USA

Tel: (702)769-9264

Fax: (702)341-5351

Tel: (888)486-1209

Email: info@ameriface.org

Internet: http://www.ameriface.org



Guardians of Hydrocephalus Research Foundation

2618 Avenue Z

Brooklyn, NY 11235

Tel: (718)743-4473

Fax: (718)743-1171

Tel: (800)458-8655

Email: ghrf2618@aol.com

Internet: http://www.ghrforg.org/



Hydrocephalus Association

870 Market Street

Suite 955

San Francisco, CA 94102

USA

Tel: (415)732-7040

Fax: (415)732-7044

Tel: (888)598-3789

Email: info@hydroassoc.org

Internet: http://www.hydroassoc.org



NIH/National Institute of Neurological Disorders and Stroke

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/



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: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx

Internet: http://rarediseases.info.nih.gov/GARD

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

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  3/8/2008

Copyright  1992, 2000 National Organization for Rare Disorders, Inc.