The number of adults with Spina Bifida continues to grow.

About half of people living with Spina Bifida in the United States are adults.

For many years, the medical community has focused on providing care for children and offers many children’s clinics throughout the country. Unfortunately, there are not enough providers who are trained to provide care for adults living with Spina Bifida. We are currently working with physicians across the country to develop models of care to provide adults with the attention they need and deserve.

Adults living with Spina Bifida


Sydney Chasteen: Growing up and Becoming Independent

I don’t have many memories of growing up wishing I didn’t have Spina Bifida.

Sydney Chasteen

Guidelines for the Care of People with Spina Bifida

Ask that your physicians use these Guidelines as a roadmap to providing care.

View Guidelines

Resources for adults with Spina Bifida

I’m interested in resources related to:

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    Development Advisory Committee Charge

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    Research Advisory Council Charge

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    Spinal Cord Tethering

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    Spina Bifida Clinic Transition Discharge Worksheet and Summary

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    SB-You: How to Understand Your Insurance Coverage and Write an Appeal Letter

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    SB-You: Questions & Answers – Your Bowel Management Program