ORGANIZATION SPOTLIGHT

FACING THE CHALLENGES: The Spina Bifida Association advocates for programs, agencies and policies that help advance research, improve access to specialized, quality care of people with Spina Bifida and raise awareness about the birth defect.

THE SPINA BIFIDA ASSOCIATION

The mission of the Spina Bifida Association (SBA) 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, SBA is committed to helping people live longer, healthier lives through research, education and support, clinical care, network building and advocacy.

Through the Spina Bifida Collaborative Care Network, SBA spearheads efforts to improve clinical care. Efforts include ensuring SB guidelines are understood and implemented; using data from the National Spina Bifida Patient Registry (NSBPR) to understand differences in patient outcomes; improving the transition from pediatric to adult care; advancing access to adult care; and networking with other organizations to build on shared education and advocacy priorities.

Living with Spina Bifida has its challenges and SBA is ready with information, education, resources and – importantly – the support of an understanding and caring community. One such resource is SBA's National Resource Center. Offering help in English and Spanish, the National Resource can identify local support, agencies, and services; the closest SBA Chapter; information about learning

and health challenges in the school environment; facilitate complex health-related questions to specialists in Spina Bifida care; and much more.

Whether you have Spina Bifida; recently learned that you are expecting a child with Spina Bifida; are a loved one or caregiver; or provide health care or community services to people with Spina Bifida, SBA is ready to help. SBA is dedicated to serving and supporting every person impacted by Spina Bifida. For more information about the Spina Bifida Association, visit their website at www.spinabifidaassociation.org •

ABOUT THE SPINA BIFIDA ASSOCIATION

The Spina Bifida Association has devoted itself to responding to the needs of those whose lives have been touched by Spina Bifida. SBA has done so by its persistent advocacy efforts; in-depth research and review of current scientific and medical investigations; creating regular opportunities for members of the community to learn from and interact with each other; and supplying health care providers with best-practices that will help them care for people with Spina Bifida throughout their lives. Learn more at spinabifidaassociation.org