Our mission is to build a better and brighter future for all those impacted by Spina Bifida.
Fueled by dedicated health care providers, parents, adults, caregivers, and others, we are committed to helping people live longer, healthier lives through:
- Education & Support
- Clinical Care
- Network Building
We advocate for research to improve the lives of people living with Spina Bifida. This advocacy 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).
In collaboration with nearly 100 health care professionals around the world, SBA facilitated an update of Guidelines for the Care of People Living with Spina Bifida. This process included the identification of research gaps that will be prioritized by the SB community.
These research priorities will be used to develop our research agenda, advocate for funding, and encourage the use of the data from the NSBPR.
SBA Spearheads through the Spina Bifida Collaborative Care Network efforts to improve clinical care for all people living with Spina Bifida. We’ll accomplish this by expanding and strengthening our relationship with clinics and health care providers, ensure guidelines are understood and being implemented by clinics and care providers, use NSBPR 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.
Education & Support
Living with Spina Bifida has its challenges. We’re here to help with in-person and online programs featuring medical experts, parents, and adults with Spina Bifida covering topics such as skin and kidney health, physical activity, mental health, living independently, and more. We are also working to expand the visibility and utilization of the National Resource Center.
We’re here to help. Whether you have Spina Bifida; recently learned that you are expecting a child with Spina Bifida; are a parent, family member, caregiver or other loved one of a person with Spina Bifida; or provide health care or community services to people with Spina Bifida, our National Resource Center is here to help.
We are dedicated to ensuring the voice of people with Spina Bifida is heard on Capitol Hill. Together, we can make a difference in the lives of those with Spina Bifida. We will not rest until every person has access to coordinated, affordable, comprehensive care.