Spina Bifida Association

The Spina Bifida Association (SBA) is a non-profit association dedicated to building a better and brighter future for those impacted by Spina Bifida. Fueled by dedicated health care providers, parents, adults, caregivers, and others, SBA is committed to helping people live longer, healthier lives through research, education and support, clinical care, and advocacy. Established in 1973 SBA advocates for research to improve the lives of people living with Spina Bifida. It has yielded the National Spina Bifida Patient Registry (NSBPR) and the Urologic Protocol for Young Children with Spina Bifida both housed at Centers for Disease Control (CDC). SBA created the sole healthcare guideline for the treatment of Spina Bifida and identified research gaps of the highest priority Spina Bifida community. These research priorities were used to develop SBA’s research agenda. SBA improves clinical care for all people living with Spina Bifida by expanding and strengthening our relationship with clinics and health care providers, ensuring uptick of the healthcare guidelines, and advocate for data to understand differences in patient outcomes in different clinical settings, improve the transition of care from pediatric clinics to adult care systems, improve access to adult care and network with other organizations to identify and build on shared education and advocacy priorities. The Association provides one-on-one information and guidance for families, individuals, providers, and others whose lives have a connection Spina Bifida. SBA offers in-person and virtual programs featuring medical experts, parents, and adults with Spina Bifida covering a variety topics. SBA ensures the voice of people with Spina Bifida is present in discussion about Spina Bifida. Our goal is to ensure that people with Spina Bifida have access to coordinated, affordable, comprehensive care.
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