National Spina Bifida Association

The National Spina Bifida Association has taken a lead advocacy position 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). SBA helps families 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. 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, the National Resource Center is there to help