22 November 2025
2025 has been a powerful reminder of the importance of youth leadership and global solidarity among young people living with SBH. As the Youth Group, we dedicated our efforts to understanding and amplifying the voices of our community, especially around mental health, identity, and disability acceptance.
21 November 2025
As the year comes to an end, we take the opportunity to reflect on our various achievements and the exciting activities that the IF Working Group on Ageing with SBH carried out during 2025.
20 November 2025
In October 2025, IF marked 10 years of active engagement in the Bridge CRPD–SDGs initiative with a special anniversary meeting held in Bangkok.
18 November 2025
We are excited to release the first factsheet of its kind exploring the role of genetics in Neural Tube Defects (NTDs). This resource has been created to provide clear, accessible information for families, healthcare professionals, and anyone interested in understanding how genetics can influence NTDs.
15 November 2025
IF Secretary General, Dr Sylvia Roozen, joined the inaugural meeting of the WHO Disability Health Equity Network in Geneva, Switzerland.
13 November 2025
Every October, the global Spina Bifida and Hydrocephalus (SBH) community comes together to raise awareness, share experiences, and strengthen our collective voice. This year’s theme ‘Accelerate Action for Spina Bifida and Hydrocephalus’ (#Action4SBH) inspired a powerful global movement of advocacy, creativity, and solidarity.
3 November 2025
We are delighted to announce that this year’s WSBHD25 Challenge Winner is Fekadu Yadessa. Through his powerful message, Fekadu called for #Action4SBH on prevention through food fortification with folic acid in Ethiopia.
25 October 2025
Today we celebrate World Spina Bifida and Hydrocephalus Day. This policy brief calls for its recognition as an official United Nations International Day to raise global awareness, promote prevention through folic acid fortification, and advocate for inclusive policies and lifelong care.
5 October 2025
On October 1, the IF Working Group on Ageing with SBH highlighted the experiences of ageing with SBH emphasizing empowerment, independence, and inclusion across all life stages. Speakers shared inspiring stories of perseverance, dreams, and creativity, showing that with support and determination, people with SBH can lead meaningful, fulfilling lives.
Get quarterly updates about all matters relevant to Spina Bifida and Hydrocephalus.
Get quarterly updates about all matters relevant to Spina Bifida and Hydrocephalus.
