24 March 2026
Launching the SBH Health Equity Project
The International Federation for Spina Bifida and Hydrocephalus (IF) is pleased to introduce the SBH Health Equity Project, a global initiative developed with our members to better understand and address inequalities in access to healthcare for people with spina bifida and hydrocephalus.
This project builds on IF’s long-standing work on health equity and related priorities, including advocacy on access to essential assistive products such as catheters, engagement in global health policy discussions, and the development of rights-based approaches to care. It is grounded in IF’s broader work on the Right to Health, which recognises health as a fundamental human right for persons with disabilities.
What do we mean by health equity?
Health equity means ensuring that everyone can access the care they need, when they need it, regardless of where they live, their financial situation, or other personal circumstances. For people with SBH, this includes timely access to specialist care, rehabilitation, assistive products, and lifelong multidisciplinary support.
Why this project?
Across countries and regions, people living with SBH continue to face significant barriers in accessing appropriate healthcare. These may include long waiting times, lack of specialist services, financial constraints, geographical distance, and differences in quality and continuity of care.
The Health Equity Project aims to better understand these realities through the voices of IF members and the wider SBH community. Rather than starting from scratch, it builds on existing knowledge and experience within the Federation, including previous publications, advocacy work, and engagement in global health initiatives such as the WHO Disability Health Equity Network.
Health systems and contexts differ widely across regions, as do the challenges faced. The project seeks to reflect this diversity while identifying common barriers and shared priorities.
A project developed with members
The SBH Health Equity Project is co-developed with IF member organisations. Early discussions have already highlighted key system-level areas of focus, including:
- Access to healthcare services
- Availability of assistive products and support services
- Quality and continuity of care
Initial feedback also suggests regional differences in priorities, with some contexts focusing more strongly on access and availability, while others emphasise affordability and quality of care.
Building the Health Equity Project together
The kick-off meeting marked the beginning of a wider, ongoing process of engagement. Several meetings are already planned with IF members and associated SBH organisations to continue exploring this common path together, share experiences, and collectively define priorities for action. These include thematic discussions, working group exchanges, and dedicated coordination meetings.
Members will also be invited to contribute through surveys, discussions, and other participatory tools that are currently being developed in collaboration with the community.
What comes next
The SBH Health Equity Project is closely connected to ongoing IF work and will link with existing working groups, thematic initiatives, and communications activities across the Federation. This ensures that health equity remains a shared and continuous conversation, not a standalone exercise.
Further updates will be shared as the project progresses, along with clear opportunities for members to contribute and help shape its outcomes.
A collective effort
At its core, the SBH Health Equity Project is built on a simple principle: meaningful change starts with listening. By working together, we aim to strengthen advocacy, highlight good practices, and support more equitable health systems for people with SBH worldwide.
Get involved
This project is developed with and for the SBH community, and your contribution is essential to its success.
As part of the Health Equity Visualisation Campaign, you can share photos, videos, or initiatives that illustrate barriers or good practices in accessing care.
Please send your examples to: [email protected]
Further opportunities to engage will be shared in the coming weeks.
