IF Opens 2026 with First Members Gathering, Setting Global Priorities

The International Federation for Spina Bifida and Hydrocephalus (IF) held its first Members Meeting of 2026 on 24 February, welcoming 43 members from across its global network. The meeting offered a platform to reflect on 2025 achievements, share national initiatives, and define priorities for the year ahead.

“One word to describe 2025: Exciting and Progress.” — IF Members Poll

Celebrating 2025 Achievements

Despite limited resources, IF marked significant milestones in 2025:

• Membership grew to 110 associations in 88 countries.
• Global visibility increased through partnerships, regional engagement, and international campaigns.
• The Kuala Lumpur Declaration strengthened commitment to health, prevention, and independent living.
• Collaboration with the World Health Organization continued, including contributions to the Assistive Products Priority List and follow-up to the 2025 WHA Resolution on Rare Diseases.

Spotlight on National Initiatives

Several members shared highlights of their work and upcoming plans.

• Belgium: Youth camps promoting independence, including wheelchair and daily living skills, with plans for an international exchange format.
• Malaysia: Strengthened advocacy and regional engagement following the 30th International Conference on SBH.
• Bulgaria: Erasmus+ youth initiatives, with proposals for joint international projects.
• USA: 19th National Hydrocephalus Conference and global engagement for World Hydrocephalus Day, involving 41 countries and 21 NGOs.
• Nigeria: Urology-focused advocacy and prevention projects, including partnerships with public health facilities and continence clinics.
• Netherlands & UK: Research symposiums, peer support initiatives, and milestone publications, including Spina Bifida in Adulthood in the UK.

Priorities for 2026

Through interactive polls, members identified four main priorities for the year ahead:

1. Advocacy & Policy: Engaging political decision-makers, promoting prevention and folic acid fortification, and supporting transition to adult care.
2. Community & Youth Engagement: Expanding youth camps, exchanges, and family support networks.
3. Research, Education & Awareness: Conferences, national awareness events, publications, podcasts, and health equity data collection.
4. Organisational Growth & Sustainability: Fundraising, membership engagement, and celebration of association anniversaries.

IF’s Youth and Ageing Groups also outlined ongoing initiatives, including quarterly meetings, advocacy campaigns, and publications to ensure ageing-related issues remain central to IF’s work.

Looking Ahead

Members were introduced to the Health Equity Project, a major initiative designed to actively involve associations in shaping health equity strategies.

Preparations are also underway for the 31st International Conference on Spina Bifida and Hydrocephalus, taking place 15–17 October 2026 in Montreal, Canada. The conference will coincide with the 50th anniversary of Spina-bifida Hydrocéphalie Québec, making it a special opportunity to celebrate progress, strengthen international collaboration, and connect the global SBH community.

Members are encouraged to register for the conference and submit country update abstracts for oral or poster presentations by 31 March 2026.

Upcoming IF Meetings and Activities

In the coming weeks, several meetings and events will bring members together across regions and thematic areas:

• 5 March: IF Regional Meeting for SBH Associations in Latin America
• 6 March: International Women’s Day Webinar
• 9 March: IF African Youth Meeting
• 19 March: IF European Members Meeting
• 24 March: IF Members Meeting – Kick-Off of the Health Equity Project
• 26 March: IF Communications Coordinators Meeting

The meeting concluded with thanks from from Dr Sylvia Roozen, IF Secretary General, for the active participation and continued commitment of members. As the network moves into 2026, IF encourages all members to build on the momentum of the past year and continue working together to advance the rights and wellbeing of people with Spina Bifida and Hydrocephalus worldwide.