About the Spina Bifida Association
Our mission is to build a better and brighter future for all those impacted by Spina Bifida.
Serving the whole community
We connect individuals — whether newly diagnosed, living with Spina Bifida, family members, or healthcare professionals — to the resources they need through chapters, local advocates and community networks across the United States and Australia.
We pursue our mission through five primary areas of work.
Five ways we build a brighter future
Research
We champion research to improve outcomes — establishing the National Spina Bifida Patient Registry and the Urologic Protocol at the CDC, and coordinating the care guidelines with ~100 professionals worldwide.
Clinical Care
Through the Collaborative Care Network we strengthen services, ensure guideline implementation, use registry data to compare outcomes, and improve pediatric-to-adult transition.
Education & Support
Via the National Resource Center we deliver individualized guidance to families, individuals and providers, plus expert-led sessions on kidney health, activity and independent living.
Network Building
We connect people to relevant resources through chapters, local advocates and community networks.
Advocacy
We ensure affected communities’ voices influence policy on Capitol Hill, working toward universal access to coordinated, affordable, comprehensive care.
Our promise
Everything we do serves one goal: a better and brighter future for all those impacted by Spina Bifida.
Join us
Become part of a community working to change lives. Give, volunteer or partner with us today.