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International Federation for Spina Bifida and Hydrocephalus

Startpagina
België
Bruxelles / Brussel
International Federation for Spina Bifida and Hydrocephalus

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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 risk 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

12/10/2026

🇨🇦 Just 3 days to go!

We’re looking forward to coming together in Montréal for the 31st International Conference on Spina Bifida and Hydrocephalus, celebrating 50 years of ASBHQ, sharing knowledge and lived experiences, and shaping a more inclusive future for the global SBH community.

📖 Explore the Conference Programme Book and get ready to join us!
https://ifglobal.org/publications/the-31st-international-conference-on-spina-bifida-and-hydrocephalus-programme-book-now-available/

10/10/2026

Lived experiences heard. Real voices. Real change. 💙

This week, members of the global SBH community came together to talk about mental health and wellbeing across the lifespan.

Our webinar brought together voices from the IF International Adult Working Group SBH and IF Youth Group, sharing personal experiences, reflecting on barriers to mental wellbeing and discussing what better support can look like at different stages of life. Their message was clear: mental health matters at every stage of life, and people with SBH must have a voice in shaping the support and services that affect them.

On World Mental Health Day, we're sharing reflections from the webinar, including insights from our speakers on stigma, self-confidence, supportive communities and the importance of listening to lived experience. Because health, dignity and inclusion go hand in hand and every voice deserves to be heard.

📖 Read the reflections and key messages from the webinar → https://ifglobal.org/news/celebrating-older-persons-and-mental-wellbeing-in-the-global-sbh-community/

08/10/2026

📣 TODAY: Let's talk about mental health across the lifespan.

What changes as we move through life with spina bifida and hydrocephalus?
What helps?
What gets in the way?
And what needs to change?

Join members of the IF International Adult Working Group SBH and IF Youth Group today for a global conversation about mental health, ageing and lived experience.

Connected Across the Lifespan
Mental Health and Wellbeing in the Global SBH Community

📅 8 October 2026 | 14:00 Brussels time
💻 Online Webinar
📣Register → https://lnkd.in/eBM3icgB

Download the campaign toolkit including conversation starters about mental health and lived experience → https://lnkd.in/eekihTeU

06/10/2026

What does health equity mean to you?

Health equity means more than access to healthcare. It means recognising our rights, our value and our right to participate fully in society and addressing the barriers that can affect people with SBH throughout their lives.

As we look towards World Spina Bifida and Hydrocephalus Day, we’re continuing this conversation during the WSBHD 2026 Online Conference.

🌎 World Spina Bifida and Hydrocephalus Day
📅 25 October 2026
🎙️ WSBHD 2026 Online Conference
🖇️ http://www.bit.ly/WSBHD26-Conference

Join us for conversations bringing together different perspectives from across the global SBH community.

Different words. Different experiences. One shared goal: health equity for people with SBH.

05/10/2026

Let's talk about mental health. For many people, talking about mental health isn't always easy. Culture, stigma, lack of information, previous experiences, limited services and other barriers can all make it difficult to ask for support.

So we want to hear from the global SBH community: What is the biggest barrier to talking about mental health in your country or culture?

Share your thoughts in the comments or bring your question to the upcoming IF global webinar: Connected Across the Lifespan - Mental Health and Wellbeing in the Global SBH Community

📅 8 October 2026 | 14:00 Brussels time
💻 Online Webinar
📣Register → https://us06web.zoom.us/webinar/register/WN_piF-CvmlRnKDn22OIi9u4Q

Download the campaign toolkit including conversation starters about mental health and lived experience → https://ifglobal.org/events/if-webinar-mental-health-and-wellbeing-in-the-global-sbh-community/

04/10/2026

WSBHD2026 GLOBAL WEBINAR
We’re excited to give you a first look at what’s coming up during the WSBHD2026 Global Webinar on 25 October! The first part of the programme will bring together voices from across the global Spina Bifida and Hydrocephalus community to explore.

🌐 From the Conference to the World: Key Reflections
What can the global SBH community take forward from meeting in Montreal?

🌍 A Lifetime of Experiences: Seeing SBH Across Life Stages
Different perspectives on living with and supporting someone with SBH across different stages of life.

💬 Youth Perspective: What Does the Theme Mean to Us?
Young people sharing their perspectives on independence, transition, participation and what a “lifetime of experiences” means to them.

🎤 Moderated by Anđela Radovanović, the session will bring together perspectives from Canada, Spain, Malaysia, Türkiye, Senegal, Belgium, Ethiopia and beyond.

And this is only the first part of the programme, more speakers and sessions will be revealed soon!

📅 25 October 2026
🕒 15:00–17:00 CEST
💻 Online: Zoom Webinar
👉 REGISTER NOW: www.bit.ly/WSBHD26-Conference

03/10/2026

💙 LAST DAYS TO SHARE YOUR JOURNEY!

What does living with spina bifida and/or hydrocephalus mean to you?
For WSBHD2026, we want to hear your experience, your voice and your story.

Your journey might be about family, friends, education, work, health, independence, community, advocacy or simply a moment that matters to you. Your story could be featured as part of the WSBHD2026 campaign, with the Community Award decided through social media voting.

⏰ Send your contribution by 8 October 2026

👉 Find out how to take part:
https://www.worldspinabifidahydrocephalusday.com/challenge-2026

Different journeys. Real voices. One community. 💙

02/10/2026

Four voices. Two generations. One global conversation.
On 8 October, members of the IF Youth Group and Adult Working Group will come together to share their experiences of mental health and wellbeing while living with SBH.

From personal experiences and changing needs across life stages to barriers, practical advice and ideas for change, our speakers will bring their own perspectives to the conversation. Make sure to join them!

📅 8 October 2026 | 14:00 Brussels time
💻 Online Webinar
📣Register → https://us06web.zoom.us/webinar/register/WN_piF-CvmlRnKDn22OIi9u4Q

📱Download the campaign toolkit → https://ifglobal.org/events/if-webinar-mental-health-and-wellbeing-in-the-global-sbh-community/

01/10/2026

Every stage of life is part of the journey.

On this , we are reflecting on what it means to grow older while living with spina bifida and hydrocephalus and on the importance of ensuring that people with SBH are supported throughout their lives.

Our experiences don't stop at childhood.They continue to evolve through adolescence, adulthood and later life. And every stage brings its own experiences, needs, challenges and strengths.

📖 Read the voices of people living with SBH in the Living Experiences catalogue → https://ifglobal.org/news/living-with-sbh-stories-of-lived-experiences/

🎙️ Then join us on 8 October for the IF webinar: Mental Health and Wellbeing in the Global SBH Community

📅 8 October 2026 | 14:00 Brussels time
💻 Online Webinar
📣Register → https://us06web.zoom.us/webinar/register/WN_piF-CvmlRnKDn22OIi9u4Q

28/09/2026

📢 The 56th Annual Meeting of the International Continence Society (ICS) is coming to Maastricht, The Netherlands, from 6–9 October 2026.

We are pleased to see spina bifida represented in the scientific programme, with research exploring different aspects of bladder and bowel dysfunction, health care transition and quality of life.

The IF community will also be represented at ICS 2026, including through an IF poster presentation and participation in the scientific programme.

Continence care is an important part of health, participation and quality of life for many people living with Spina Bifida and Hydrocephalus. We welcome opportunities to bring SBH perspectives and lived experience into international research and professional discussions.

👉 Explore the ICS 2026 programme and conference details: https://www.ics.org/2026

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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