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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

230 W. Monroe St.

Suite 1800

Chicago, IL 60606-4802

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: 32025020413

Fax: 32025021129

Email: info@ifglobal.org

Internet: http://www.ifglobal.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

Internet: http://www.ninds.nih.gov/



Spina Bifida and Hydrocephalus Canada

Suite 647-167 av. Lombard Avenue

Winnipeg

MB

R3B 0V3

Canada

Tel: 2049253650

Fax: 2049253654

Tel: 8005659488

Email: info@sbhac.ca

Internet: http://www.sbhac.ca



Shine

42 Park Road

Peterborough, PE1 2UQ

United Kingdom

Tel: 01733555988

Fax: 08454507755

Email: info@shinecharity.org.uk

Internet: http://www.shinecharity.org.uk/



Birth Defect Research for Children, Inc.

976 Lake Baldwin Lane

Orlando, FL 32814

USA

Tel: (407)895-0802

Email: staff@birthdefects.org

Internet: http://www.birthdefects.org



Pathways Awareness Foundation

2591 Compass Rd

Suite 100

Glenview, IL 60026

USA

Tel: (847)510-5633

Tel: (800)955-2445

Email: friends@pathwaysawareness.org

Internet: http://www.pathwaysawareness.org



Christopher & Dana Reeve 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

P.O. Box 510034

Milwaukee, WI 53203

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

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



Spina Bifida & Hydrocephalus Association of Ontario

555 Richmond St W

PO Box 103

Ste 1006

Toronto, Ontario, M5V 3B1

Canada

Tel: 4162141056

Fax: 4162141446

Tel: 8003871575

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, 4102

Australia

Tel: (07) 3844 4600

Fax: (07) 3844 4601

Email: info@sbhqueensland.org.au

Internet: http://www.spinabifida.org



Chiari & Syringomyelia Foundation

290 Broadhollow Road, Suite 210E

Melville, NY 11747

Tel: (516)228-3565

Internet: http://www.CSFinfo.org



Fetal Hope Foundation

9786 South Holland Street

Littleton, CO 80127

USA

Tel: (303)932-0553

Tel: (877)789-4673

Email: info@fetalhope.org

Internet: http://www.fetalhope.org



Medical Home Portal

Dept. of Pediatrics

University of Utah

P.O. Box 581289

Salt Lake City, UT 84158

Tel: (801)587-9978

Fax: (801)581-3899

Email: mindy.tueller@utah.edu

Internet: http://www.medicalhomeportal.org



For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to MyD-H, the Dartmouth-Hitchcock patient portal. You must be a registered MyD-H user for the Lebanon, Manchester, or Nashua locations to access this site.

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:  9/23/2007

Copyright  1984, 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1993, 1999, 2006, 2007 National Organization for Rare Disorders, Inc.

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