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International Federation for Spina Bifida and Hydrocephalus

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International Federation for Spina Bifida and Hydrocephalus

The International Federation for Spina Bifida and Hydrocephalus (IF) is the umbrella organisation for Spina Bifida and Hydrocephalus associations worldwide.

IF and its members advocate for the rights of people with Spina Bifida and Hydrocephalus, to enable them to reach their full potential and participate in society on an equal basis with others. IF and its members urge governments to develop and implement primary prevention policies that will ensure that women of childbearing age will have adequate folate levels before conception, to decrease the r

isk of neural tube defects such as Spina Bifida affecting their pregnancy. IF has member organisations in the following countries: Algeria, Argentina, Australia (2), Austria, Belgium (2), Bulgaria, China, Colombia, Croatia, Denmark, Estonia, Finland, France, Germany, Greece, Guatemala, Honduras, Hungary, India, Ireland, Italy, Japan (2), Kenya, Latvia, Lithuania, Luxembourg, Malaysia, Mexico, Mongolia, Morocco, the Netherlands, Nigeria, Norway, Peru, Poland, Portugal, Romania, Russia, Scotland, Serbia, Slovakia, South Africa, Spain (4), Sudan, Sweden (2), Switzerland, Tanzania,Turkey, Uganda, UK, USA (2), Zambia

05/05/2026

As we approach the World Health Assembly, we’re highlighting our latest publication on nutrition and prevention.

📘 Nutrition for Growth Paris 2025: Tracking Commitments to Large-Scale Food Fortification

Large-scale food fortification is a simple, cost-effective way to prevent neural tube defects and improve health outcomes worldwide. This work, developed with GAIN and partners, supports ongoing efforts to strengthen nutrition and health equity.

🔗 Read more: https://ifglobal.org/publications/nutrition-for-growth-paris-2025-tracking-commitments-to-large-scale-food-fortification/

30/04/2026

New publication available 💼

We are pleased to share the updated guidelines on spinal dysraphism in children and adolescents, developed in collaboration with European partners and networks.

This work supports better, coordinated care for children with Spina Bifida and highlights the importance of strong partnerships in improving health outcomes.

🔗 Read more:
https://ifglobal.org/publications/updated-peadiatric-urological-guidelines-for-children-and-adolescents-with-spina-bifida/

31st International Conference on Spina Bifida and Hydrocephalus

28/04/2026

⏳ 3 DAYS LEFT!
Don’t miss your chance to be part of the SBH Conference 2026 programme.

📝 Submit your abstract before 30 April 2026
We welcome contributions from healthcare professionals, researchers, and SBH associations (including country updates).

📍 Montréal | 15–17 October 2026
👉 www.sbhconference2026.com

24/04/2026

🌟 Empowering Independence at Youth Camp

Through its member associations, IF supports initiatives such as Youth Camps, where children and teens with Spina Bifida develop independence in a fun, supportive environment. Participants set personal goals, from self-care and wheelchair skills to building confidence, and practise them with guidance from volunteers, including those with lived experience.

Your support makes this possible. Donations help support these initiatives by contributing to volunteers, equipment, and accessible activities, giving children the tools to thrive and families peace of mind.

➡️ Learn more and support: https://bit.ly/IFTeaming

23/04/2026

🌟 Keynote Speaker Spotlight: Dr Sara Long-Gagné
We are pleased to introduce Dr Sara Long-Gagné as a keynote speaker at the 31st International Conference on Spina Bifida and Hydrocephalus.

Paediatrician at Montreal Children’s Hospital and co-director of the Spina Bifida service, Dr Long-Gagné specialises in complex care and coordination for children with chronic conditions.

🎤 Her keynote will focus on transitioning, a key stage in supporting young people moving to adult care.

✨ Join us to learn, connect, and engage with the global SBH community.

🔗 www.sbhconference2026.com
📍 15–17 October 2026 | Montréal

21/04/2026

Why attend the 31st International Conference on Spina Bifida and Hydrocephalus? ✨

Join a global community of healthcare professionals, researchers, advocates, and people with lived experience to:
🔹 Share your expertise or learn from international peers
🔹 Stay up to date on clinical, research, policy, and advocacy developments
🔹 Connect with a multidisciplinary global network
🔹 Gain insights from lived experience and collaborative discussions

🎉 Plus, this year’s edition will celebrate the 50th anniversary of ASBHQ, with a special networking and celebration moment.

⏳ Abstract deadline approaching > 30 April 2026
Don’t miss your chance to be part of the programme!

🔗 Learn more : https://bit.ly/31stsbhconference

20/04/2026

Malaysia achieves first womb surgery for a spinal condition ✨

A pioneering fetal surgery has shown encouraging outcomes for a baby affected by spina bifida, marking an important step forward in prenatal care.

Such advances highlight the rapid progress in fetal medicine and the growing potential to improve outcomes for babies affected by spinal conditions even before birth.

Read more:
🔗 https://www.malaymail.com/news/malaysia/2026/04/17/malaysias-first-womb-surgery-for-spine-condition-sees-baby-doing-well-after-birth/216655
🔗 https://www.bernama.com/en/region/news.php?id=2545995

16/04/2026

🌟 Keynote Speaker Spotlight | Prof. Dr. Alexander von Gontard

We are pleased to welcome Prof. Dr. Alexander von Gontard as a keynote speaker at the 31st International Conference on Spina Bifida and Hydrocephalus
📍 15–17 October 2026 | Montréal

Prof. Dr. von Gontard is a child and adolescent psychiatrist, psychotherapist, and paediatrician, internationally recognised for his work on mental health, incontinence, chronic conditions, and disability in children and adolescents. He also serves as an advisor to IF, supporting rights-based and holistic approaches to care.

✨ Don’t miss this opportunity to attend his keynote, connect with the global SBH community, and learn from leading international experts.

🔗 Learn more & register: www.sbhconference2026.com

14/04/2026

Are you passionate about making a difference in the Spina Bifida & Hydrocephalus community?We are looking for new members to join the IF International Youth Group SBH.

This group brings together young people from around the world to share lived experiences, shape advocacy, and work together on key issues affecting youth with SBH.

This is your chance to:
✔ Contribute to international advocacy
✔ Connect with a global community
✔ Help shape the future of SBH

📩 Send your application: [email protected]
📅 Deadline: 30 April 2026
🔗 Info: https://ifglobal.org/ifinternationalyouthgroupsbh/

10/04/2026

Celebrating IF Siblings Day💛

Today, we celebrate the important role of siblings of persons with Spina Bifida and Hydrocephalus. Siblings are often a steady source of support, understanding and strength. They grow up side by side, sharing everyday moments, facing challenges together, and building lifelong bonds.

At IF, we recognise how important family support is, and the unique place siblings hold within the SBH community. Their experiences and perspectives matter, and help shape more inclusive and supportive environments for all.

This Siblings Day, we celebrate these relationships, the small moments, the shared journeys, and everything that makes siblings smile. 💛

08/04/2026

🌟 Keynote Speaker Spotlight: Dr. Marie-Pierre Fournier-Gosselin
🧠 Functional neurosurgery | Hydrocephalus | Movement disorders

Dr. Fournier-Gosselin, neurosurgeon at CHUM and expert in neuromodulation therapies, will share her insights at the 31st International Conference on Spina Bifida and Hydrocephalus, Montréal, 15–17 October 2026.

Don’t miss this chance to connect with the global SBH community and learn from leading experts.

🔗 Register now and find out more here: www.sbhconference2026.com

07/04/2026

On World Health Day, we stand with science and for health equity.

As part of the WHO Disability & Health Equity Network, the International Federation for Spina Bifida and Hydrocephalus works to ensure that people with SBH have access to the care and support they need, wherever they live. Our involvement in the World Health Organization (WHO) network and initiatives like the Health Equity Promotion (HEP) project supports inclusion, strengthens services, and helps turn evidence into action.

Discover more about our work and partnership with WHO:

🔗 https://ifglobal.org/news/if-participates-in-the-inaugural-meeting-of-the-who-disability-health-equity-network/

Adres

Rue Des Alexiens 16
Brussels
1000

Openingstijden

Maandag	09:00 - 17:30
Dinsdag	09:00 - 17:30
Woensdag	09:00 - 17:30
Donderdag	09:00 - 17:30
Vrijdag	09:00 - 17:30

Website

http://www.ifglobal.org/

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