10 November 2026
From 15 to 17 October 2026, Montréal, Canada, became a meeting place for the global spina bifida and hydrocephalus (SBH) community as the 31st International Conference on Spina Bifida and Hydrocephalus brought together people with lived experience, families, healthcare professionals, researchers and advocates from 34 countries.
Held under the theme “A Lifetime of Experiences: From Preconception to Ageing”, the conference provided three days of knowledge-sharing, discussion and exchange across the different stages of life with SBH. Through keynote presentations, scientific sessions, workshops, country updates and personal stories, participants explored shared challenges, emerging knowledge and opportunities to strengthen care, inclusion and quality of life.
The gathering also marked a special milestone: the 50th anniversary of Spina Bifida Hydrocephalie Québec (ASBHQ), the local host organisation, recognising five decades of commitment to the SBH community.
Beyond the programme itself, the conference offered an important opportunity to strengthen relationships across the global SBH movement and reflect on how collaboration between people with lived experience, healthcare professionals, researchers, organisations and policymakers can help advance shared priorities.
A global community, sharing knowledge and experience
The conference brought together a wealth of knowledge, research and lived experience, exploring topics relevant to people living with SBH throughout the lifespan.
From advances in hydrocephalus care and fetal surgery to sleep, mental health, employment, transitioning, quality of life, human rights and prevention, the presentations highlighted current developments, challenges and opportunities for progress.
Explore the conference programme book to discover the presentations and read the abstracts, reflecting the breadth of knowledge and expertise shared in Montréal.
Day 1 | Improving hydrocephalus care through research and collaboration
The conference opened with a keynote on hydrocephalus by Dr Marie-Pierre Fournier-Gosselin, setting the scene for discussions on research, clinical practice and care. Special guest Danny Lamb also joined the conference, bringing his perspective and experience to the international gathering.
Alongside the keynote, parallel sessions offered opportunities to explore different aspects of SBH. Lived experiences were an important part of the programme, with contributions from Katrina Keating and Alana Robertson, and Caleb and Sara Catherine St Laurent.
Discussions explored developments in the understanding and management of hydrocephalus, highlighting the importance of continued research, collaboration between specialists and access to appropriate care throughout life.
The day set the scene for three days of knowledge-sharing, with opportunities to exchange experiences, explore new approaches and strengthen connections across the international SBH community.
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Research, prevention and innovation
The programme also looked at prevention and emerging approaches to care. A fetal surgery workshop led by Dr Agnieszka Pastuszka explored this important area of clinical practice.
In a sponsored session, GAIN examined food fortification and folic acid, from prevention to lifelong outcomes. The Ping Pong Genetics session brought together Dr Richard Finnell and Dr Eduardo Tizzano for an exchange on genetics and SBH.
Young people at the centre
The Youth Forum, co-led by Danny Lamb and Ina Åkerberg, provided a dedicated space for young people to connect and exchange perspectives, keeping their experiences and priorities central to the conference.
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The day closed three days of knowledge-sharing and exchange, reinforcing the importance of taking a holistic approach to SBH, one that recognises physical health, mental health, personal experiences and the different contexts in which people live.
Celebrating achievements and recognising contributions
The 31st International Conference was also a special occasion to celebrate the 50th anniversary of ASBHQ.
The anniversary cocktail brought the community together for an evening of celebration, with games, shared memories and an expressive dance performance by ASBHQ members. It was a joyful opportunity to recognise five decades of commitment to the SBH community and to celebrate the people, relationships and collective efforts that have helped advance support and inclusion.
The conference was also an opportunity to celebrate the people whose dedication, work and contributions continue to make a difference to the SBH community. Three moments stood out:
- International Recognition – Victoria Sandoval
The conference also paid tribute to Victoria Sandoval, IFSBH President, whose passing was deeply felt across the community. This moment of remembrance and international recognition honoured her contribution and the lasting mark she leaves on the SBH community. - Lifetime Achievement Award – Dr Forbes
Dr Forbes received a Lifetime Achievement Award in recognition of her 50 years of founding and directing the interdisciplinary Spina Bifida Clinic at Montreal Children’s Hospital, and her longstanding contribution to care and support for people with spina bifida. - Best Poster Award – Sofia Girotti-Switzer
At just 17 years old, Sofia Girotti-Switzer received the Best Poster Award for her work, TONHI: The Transcranial Observational Network for Hydrocephalus Investigation. Her recognition highlighted the importance of encouraging and celebrating the next generation of researchers.
Looking ahead: Turning shared knowledge into action
The conference was an opportunity not only to exchange knowledge and experiences, but also to identify shared priorities for the future of the global SBH community.
The closing remarks highlighted three areas for continued action:
- Strengthen collaboration and knowledge-sharing at national, regional and international levels.
- Unite partnerships to accelerate advocacy and advance the rights and priorities of people with SBH.
- Build stronger bridges between lived experience, healthcare, science and policy, ensuring that different perspectives inform progress.
Our shared ambition is a stronger, more connected global SBH community that learns together, advocates together and drives meaningful change together.
Two priorities for the Government of Canada
The closing remarks also identified two opportunities for the Government of Canada to support progress internationally:
- Facilitate a committee on hydrocephalus to bring together relevant stakeholders and advance coordinated dialogue, expertise and action.
- Champion UN recognition of World Spina Bifida and Hydrocephalus Day (WSBHD) by mobilising international support and advancing the proposal within the United Nations system.
These priorities reflect the importance of sustained collaboration between governments, organisations, healthcare professionals, researchers and people with lived experience.
See you in Slovakia in 2028
The global SBH community will come together again for the 32nd International Conference on Spina Bifida and Hydrocephalus, hosted in Bratislava, Slovakia in collaboration with the local association SBAH.
While further details will be announced in due course, we look forward to continuing the conversations, connections and shared commitment that brought us together in Montréal.
SAVE THE DATE: 12-14 OCTOBER 2028
Thank you
Thank you to everyone who joined us in Montréal or contributed to these moments of knowledge-sharing and connection.
Together, we can continue building a stronger, more connected global SBH community that learns together, advocates together and drives meaningful change together.
