Spina Bifida

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Spina Bifida is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • Neural Tube Defect
  • SB

Disorder Subdivisions

  • Spina Bifida Cystica
  • Spina Bifida Occulta

General Discussion

Spina bifida is characterized by incomplete closure of certain bones of the spinal column (vertebrae), leaving a portion of the spinal cord exposed. Part of the contents of the spinal canal may protrude through this opening. In the most severe form, rachischisis, the opening is extensive. Spina bifida may cause difficulties with bladder control, walking and/or other functions, depending on the severity of associated symptoms.

Resources

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

Spina Bifida Association of America
4590 MacArthur Boulevard NW
Suite 250
Washington, DC 20007-4226
Tel: (202)944-3285
Fax: (202)944-3295
Tel: (800)621-3141
Email: sbaa@sbaa.org
Internet: http://www.sbaa.org

Easter Seals National Headquarters
233 South Wacker Drive, Suite 2400
Chicago, IL 60606
Tel: (312)726-6200
Fax: (312)726-1494
Tel: (800)221-6827
TDD: (312)726-4258
Email: info@easterseals.com
Internet: http://www.easterseals.com

International Federation for Spina Bifida and Hydrocephalus
Cellebroersstraat 16
Brussels, B1000
Belgium
Tel: +32 (0)2 502 0413
Fax: +32 (0)2 502 1129
Email: info@ifglobal.org
Internet: http://www.ifglobal.org

National Institute of Neurological Disorders and Stroke (NINDS)
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/

Spina Bifida and Hydrocephalus Association of Canada
Suite 428-167
av. Lombard Avenue
Winnipeg,, R3B 0V3
Canada
Tel: 204-925-3650
Fax: 204-925-3654
Tel: 800-565-9488
Email: spinab@mts.net
Internet: http://www.sbhac.ca

Association for Spina Bifida and Hydrocephalus
ASBAH House
42 Park Road
Peterborough, PE1 2UQ
United Kingdom
Email: postmaster@asbah.org
Internet: http://www.asbah.org

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/

Pathways Awareness Foundation
150 North Michigan Ave.,Ste.2100
Chicago, IL 60601
USA
Tel: (312)893-6620
Fax: (312)893-6621
Tel: (800)326-8154
TDD: (800)326-8154
Email: friends@pathwaysawareness.org
Internet: http://www.pathwaysawareness.org

Sjældne Diagnoser / Rare Disorders Denmark
Frederiksholms Kanal 2, 3rd Floor
Copenhagen K, 1220
Denmark
Tel: 45 33 14 00 10
Fax: 45 33 14 55 09
Email: mail@sjaeldnediagnoser
Internet: http://www.raredisorders.dk

Christopher Reeve Paralysis Foundation
636 Morris Turnpike, Suite 3A
Short Hills, NJ 07078
USA
Tel: (973)379-2690
Fax: (973)912-9433
Tel: (800)225-0292
Email: prc@ChristopherReeve.org
Internet: http://www.christopherreeve.org

New Horizons Un-Limited, Inc.
811 East Wisconsin Ave
Suite 937
Milwaukee, WI 53202
USA
Tel: (414)299-0124
Fax: (414)347-1977
Email: horizons@new-horizons.org
Internet: http://www.new-horizons.org

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: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

Spina Bifida and Hydrocephalus Association of Ontario
55 Richmond St W
PO Box 103
Ste 1006
Toronto, Ontario, M5V 3B1
Canada
Tel: 416-214-1056
Fax: 416-2141446
Email: provinivial@sbhao.on.ca
Internet: http://www.sbhao.on.ca

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

Spina Bifida Hydrocephalus Queensland
PO Box 8022
Woolloongabba, Queensland, 4120
Australia
Tel: (07) 3844 4600
Fax: (07) 3844 4601
Email: info@sbhqueensland.org.au
Internet: http://www.spinabifida.org

American Association of Neurological Surgeons
5550 Meadowbrook Drive
Rolling Meadows, IL 60008-3852
Tel: (847)378-0500
Fax: (847)378-0600
Tel: (888)566-2267
Email: info@aans.org
Internet: http://www.NeurosurgeryToday.org and http://www.aans.org

Chiari & Syringomyelia Foundation (CSF)
29 Crest Loop
Staten Island, NY 10312
Tel: 718-966-2593
Fax: 718-966-2593
Email: dpoppe@CSFinfo.org
Internet: http://www.CSFinfo.org

Fetal Hope Foundation
9786 S Holland Street
Littleton, CO 80127
USA
Tel: (303)932-0553
Tel: (877)789-4673
Email: info@fetalhope.org
Internet: http://www.fetalhope.org

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

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