Spina Bifida

Spina Bifida is one type of neural tube birth defect.  It involves incomplete development of the brain, spinal cord and/or protective coverings for these organs. Spina Bifida is the most common neural tube defect and affects the spinal cord. Because of today’s sophisticated medical techniques, most children born with Spina Bifida live well into adulthood. However, the challenges brought on by this condition are likely to continue throughout the child’s life. Medical, psychological and educational therapy and services are recommended as needed to ensure that the child leads an independent and fulfilling life.

Associations/Groups:

Spina Bifida Association of America (SBAA) 

Serves adults and children who live with the challenges of Spina Bifida.
1600 Wilson Blvd, Suite 800
Arlington, VA 22209
Phone: 202 944-3285 or 800 621-3141
Email: sbaa@sbaa.org

Spina Bifida Association of Greater New England (SBAGNE)

Group of parents, adults with Spina Bifida, and dedicated professionals working together to support and encourage families and individuals throughout the Greater New England area. It is our goal to enrich the lives of those affected by Spina Bifida through education, parental support, social networking, advocacy and public awareness.
219 East Main Street
Suite 100 B
Milford, MA 01757
Toll Free: 888-479-1900
Jean Bertschmann, Executive Director
E-mail: edugan@SBAGreaterNE.org

Spina Bifida Clinics in Massachusetts

• Children’s Hospital
  Spina Bifida and Spinal Cord Conditions Center
  300 Longwood Avenue Fegan 3
  Boston, MA 02115
  Phone: 1-617-355-8532
• Massachusetts General Hospital
  Spina Bifida and Related Disorders Program
  55 Fruit Street Suite 3400 E
  Boston, MA 02114
  Phone: 617-726-7552
• Tuft’s Medical Center Pediatric Neurosurgery
  300 Longwood Avenue
  Boston, MA 02115
  Phone: 617-636-7920
• Pappas Rehabilitation Hospital for Children
  3 Randolph Street
  Canton, MA 02021
  Phone: 781-828-2440
• Shriners Children’s
  Myelodysplasia Clinic
  516 Carew Street
  Springfield, MA 01104
  Phone: 413-735-1234

Other Information:

What is Spina Bifida?

Centers for Disease Control and Prevention: Spina bifida is a condition that affects the spine. It is usually apparent at birth. It is a type of neural tube defect (NTD).

Spina Bifida Information Page 

National Institute of Neurological Disorders and Stroke: Spina bifida is a birth disorder that involves the incomplete development of the spine. 

Fact Sheet last updated on: 8/30/2024

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