Spina Bifida Association of America
Spina Bifida Association of America
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More about this organization
Mission
Since 1973, the Spina Bifida Association (SBA) has been the only national voluntary health agency solely dedicated to promoting the prevention of Spina Bifida and enhancing the lives of all those affected through education, advocacy, research, and support.
About
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 them 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, psychologists, 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 the NSBPR.
