Community Building

Our Commitment

IF is committed to supporting people with Spina Bifida and Hydrocephalus (SBH), their families, and member organisations by:

• Facilitating access to knowledge about rights, healthcare, and best practices.
• Sharing examples of the achievements and contributions of people with SBH.
• Strengthening the capacity of member organisations to represent and support their communities effectively.
• Promoting mutual learning, research-informed advocacy, and collaboration across the global SBH community.

Capacity Building for Members

IF provides ongoing trainings, webinars, and interactive learning opportunities to support member organisations worldwide. These activities include:

• Twinning and mentoring: One-to-one support and exchange between members across countries and regions.
• Practical guidance and toolkits: Co-developed resources to address real-world challenges in care, advocacy, and community support.
• Individual consultations: Tailored guidance for organisations to implement advocacy, community initiatives, or monitor rights at local and national levels.

Whenever possible, IF organises in-person gatherings, including youth meetings, regional workshops, and international conferences. These are complemented by online events, ensuring that all members can participate, regardless of location.

International Conferences & Regional Meetings

Biennial International Conference

IF hosts a biennial International Conference, bringing together individuals with SBH, families, health professionals, researchers, and policymakers from around the world. The conference provides opportunities to exchange knowledge, share best practices, and strengthen global networks.

Thematic Conferences

IF organises thematic conferences and regional meetings as needs arise, focusing on specific topics such as advocacy, health, education, or rights. These events provide members with opportunities to collaborate, learn from each other, and co-develop resources tailored to local and regional priorities.

Networking & Knowledge Sharing

IF fosters peer-to-peer learning and exchange across the global SBH community by:

• Sharing experiences, best practices, and innovative approaches.
• Providing access to webinars, online discussion forums, and collaborative projects.
• Supporting members in research-informed strategies to strengthen their local, regional, and national impact.

Resources for the Community

IF develops and provides tools, guidance, and materials to support members, families, and professionals:

• Reports, guidelines, and practical toolkits
• Campaign resources and advocacy materials
• Webinars, recordings, and training sessions

These resources are designed to ensure that members can apply knowledge directly in their communities and continuously improve care, advocacy, and support for people with SBH.

Contact us for more information: [email protected]