spine model

Listing: Spina Bifida Resources

Media Type

Online Resource

Reviewed Date

Jan 3, 2023


Spina bifida is a congenital disability (a disability that is present at birth) that affects the spine. A baby who has the most severe form of spina bifida will be born with part of the spinal cord outside the body. Mild spina bifida might not cause symptoms. Spina bifida happens during the first trimester of pregnancy, when the structure that eventually becomes a baby’s spinal cord (the neural tube) doesn’t develop properly.

The following Spina Bifida resources included in this listing will assist the consumer to obtain information from the national and local programs level that focus primarily on Spina Bifida.


Spina Bifida Association promotes the prevention of Spina Bifida and to address the needs of all those affected. Services provided include: scholarship fund, camps, mentoring programs, listservs, support groups and chapters, and a national conference. You can find information on their site about many issues pertaining to Spina Bifida such as pregnancy, expecting parents, health information, education, latex, folic acid, genetics, and more.

1600 Wilson Blvd, Suite 800
Arlington, VA 22209


The Illinois Spina Bifida Association works to improve the quality of life of children, adults, and families living with spina bifida.  Programs include:Community-Clinic Connection- provides families living with spina bifida individualized support and coaching services from a social worker who can meet at their homes.  This new program is currently being piloted in Central Illinois. They also support a variety of programs such as, a youth camp called Camp Independence in association with the YMCA of Metro Chicago, Go Baby Go workshops, support groups, play dates, youth ladies support groups, Adult support Groups, Scholarships for post high school students, equipment and emergency assistance funds, and support research funds.Illinois Spina Bifida Association of Illinois

2211 N. Oak Park Avenue
Chicago, Il 60707


SHINE – Spina Bifida, Hydrocephalus, Information, Networking, Equality (formerly the Association for Spina Bifida and Hydrocephalus) provides services in the United Kingdom. The website has information on the conditions, treatment, and publications.

42 Park Road


Centers for Disease Control and Prevention (CDC) features information on how spina bifida affects infants, toddlers and preschoolers, school-age children, adolescents, and young adults, as well as a video on people with spina bifida and their parents. 

1600 Clifton Road Atlanta, GA 30329-4027 USA
800-CDC-INFO (800-232-4636), TTY: 888-232-6348


NINDS- NIH Neurological Institute provides a definition of Spina Bifida, treatment, prognosis, clinical trials listing, patient organizations related to spina bifida and related publications for consumers to connect to. Click on the link below to access their website.NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Voice: (800) 352-9424


This content is for informational purposes only and may not be comprehensive. Information contained does not imply an endorsement from Shirley Ryan AbilityLab, and does not replace the advice of a qualified healthcare professional.  See here  for further details.

© Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago)
Henry B. Betts LIFE Center – (312) 238-5433

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