Advances in spina bifida care: The global journey toward dignity, inclusion, and innovation.

Abstract

For nearly a decade, the special issue for spina bifida (SB) in the Journal of Pediatric Rehabilitation Medicine (JPRM) has become an epicenter for qualitative, state of the art, and innovative SB research. It has been noted that the concept of "blue marble health," a policy framework to illustrate trends in the geographic distribution of neglected diseases affecting at-risk populations, may also have a place in illustrating the SB care paradigm in high-income countries such as those in North America and Europe. Concurrently, JPRM has dawned to provide insight into SB care worldwide, both in the Global North as in the Global South. Also in recent years, the Guidelines for the Care of People with Spina Bifida, a product of the Spina Bifida Association (SBA) Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention, have mapped the advance. The SBA continues to catalyze open and in-person dialogue among clinicians and investigators. The 2025 Spina Bifida Clinical Care Meeting, hosted by Shriners Children's Northern California, included the involvement of adult members of the SB community, parents, clinicians, and researchers. Subsequently, this special issue includes state of the art articles initially presented at this conference. Now it is up to all of us to uphold the standard as we embark onto equitable and sustainable development of opportunities for those affected by SB across our diverse and global community.