Towards a United Nations-Recognized WSBHD

Towards a United Nations recognised International Day for SBH:
World Spina Bifida and Hydrocephalus Day

Every year, hundreds of thousands of children are born with spina bifida and hydrocephalus (SBH), conditions that can shape a lifetime of medical, social, and emotional challenges. Yet with awareness, prevention, and care, these challenges can be mitigated. SBH are congenital conditions that affect the brain and spine, forming part of a group known as Neural Tube Defects, the second most common type of structural birth defects worldwide. Each year, one in every 500 children are born with SBH, most of them in countries where food is not fortified with folic acid, a simple and effective preventive measure. For families, SBH brings a lifetime of challenges: high medical costs, limited access to quality care, and ongoing social and emotional strain. Yet beyond the statistics are millions of stories of resilience, love, and determination. Too often, people living with SBH face stigma, misunderstanding, and barriers that prevent them from fully participating in their communities. Weak surveillance systems, under-resourced healthcare, and limited policy attention mean that individuals go undiagnosed, unsupported, or unheard.

A United Nations–recognised World Spina Bifida and Hydrocephalus Day (WSBHD) would be of great help to change that. It would give visibility to the millions of people and families affected, raise awareness of prevention and lifelong care, and inspire action across governments, civil society, and communities. A UN Recognised WSBHD would challenge stigma, promote inclusion, and celebrate the strength of person living with SBH. This document explains why a WSBHD is urgently needed and how individuals, communities, and governments can take action. Establishing this day would raise global awareness, highlight the importance of prevention and lifelong care, challenge stigma, and inspire collaboration across families, civil society, and healthcare systems.

By supporting the UN Recognised WSBHD, we can advocate for folic acid fortification, better access to healthcare and education, inclusive policies, and respect for the rights of person living with SBH. Declaring this day would send a strong message: every person living with SBH deserves dignity, support, and the chance to thrive.

Download & read the IF Policy Brief WSBHD here.