Spina Bifida Association of America

Research and clinical care the Spina Bifida Association (the Association) developed the Spina Bifida collaborative care network (sbccn) to improve the health care of people with Spina Bifida, enabling then to have better care. The sbccn, when completed, will build a system that monitors, tracks, and evaluates care provided in Spina Bifida clinics and other health care settings. The sbccn is made up of people of different backgrounds and experiences: Spina Bifida Association (sba) staff, chapter leaders, doctors, nurses, psychologist, the centers for disease control and prevention (cdc), parents of children with Spina Bifida, and adults with Spina Bifida. The Association worked in conjunction with the national center on birth defects and developmental disabilities to continue research through the national Spina Bifida patient registry (nsbpr). The Spina Bifida collaborative care network produced guidelines for the care of people living with Spina Bifida which included research from nsbpr. In 2023 the world congress on Spina Bifida research and care hosted 100 health and research institutes, from 18 countries and 35 states within the u.s. and the district of columbia.

Chapter development the Association promotes the growth and development of its 14 chapters through technical assistance in capacity building, communications, programmatic resources and grants.

Education - the Association's education programs provide parents, caregivers and persons living with Spina Bifida with tools and resources at critical points in development and transition. Education and informational resources were provided to over 325,000 people with Spina Bifida, parents, and caregivers as we continued to expand our reach in 2022 as a result of incorporating social media.