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
Fax: 202 944-3295
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
Fax: 508-482-5301
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 Ave., Fegan 3
Boston, MA 02115
Phone: 1-617-355-8532 - Massachusetts General Hospital
Pediatric Orthopaedics SB Clinic
55 Fruit Street Suite 3400 E
Boston, MA 02114
Phone: 617-726-7552 - Floating Hospital for Children at Tuft’s Medical Center
Neuromuscular Disorders Program755 Washington St.
Floating Building, 4th floor
Boston, MA 02111
Phone: 617-636-7920
- Pappas Rehabilitation Hospital for Children
3 Randolph Street
Canton, MA 02021
Phone: 781-828-2440 - Shriner’s Hospital for Children
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 Information Page – National Institute of Neurological Disorders and Stroke
Fact Sheet last updated on: 8/30/2021
____________________________________________________________________________________________________________________
Disclaimer: INDEX is pleased to provide you this information. Please note, this information is not comprehensive, nor is it intended to take the place of professional advice. We encourage you to check other resources of such information. No endorsement by the University of Massachusetts Medical School, DisabilityInfo.org, INDEX, or affiliates, should be inferred. We reserve the right to remove, to modify, or to add any information at any time, for any reason, and without notice.
Any information you may provide to update or further complete this information would be appreciated. Please contact us with comments. We appreciate your help.
