World Spina Bifida and Hydrocephalus Day – Online Conference 2026

OUR RIGHTS. OUR VOICES. OUR FUTURE.

WSBHD · Disability Rights · Accessibility · Health Equity · Inclusion

25 October 2026 | 15:00–17:00 CEST | Online

What does it mean to live with spina bifida and/or hydrocephalus across different stages of life?

For World Spina Bifida and Hydrocephalus Day 2026, IF brings our community together for a global conversation centred on real voices and real-life experiences.

This year’s theme, “A Lifetime of Experiences: From Preconception to Ageing”, invites us to look beyond individual moments of care and consider the experiences, opportunities, barriers and support needs that can shape a person’s life with SBH.

From childhood and education to transition, employment, relationships, independence, health and participation, people with SBH and their families navigate different experiences across the life course. Yet many of these experiences remain unheard in policy, services and wider society.

This webinar will create space for people with SBH, families, young people and partners to share their perspectives and reflect on what needs to change.

What will we explore?

The conversation will include perspectives across generations and life stages, including:

• Living a lifetime with SBH: What can we learn from experiences across different stages of life?
• Youth perspectives: What does a “lifetime of experiences” mean to young people today?
• Transitions and changing needs: What happens when childhood services end, and how can people be better supported through education, employment, healthcare and adult life?
• Rights, participation and inclusion: How can lived experience shape the policies and services that affect people with SBH?
• Mental health and wellbeing: How do connection, independence, identity and participation influence wellbeing throughout life?

Most importantly, we want to hear from the people who live these experiences.

The webinar will bring together voices from across the SBH community, alongside perspectives from organisations and professionals working to improve rights, health, inclusion and participation.

Be part of the conversation

Whether you live with SBH, are a parent or family member, work in the field, or are involved in an SBH organisation, your perspective matters.

Join us on 25 October to listen, share experiences and help build a future where people with SBH are heard throughout every stage of life.

Register for the WSBHD2026 Global Webinar: http://www.bit.ly/WSBHD26-Conference 

25 October 2026 | 15:00–17:00 CEST | Online