This poster summarises the core findings from the Fabry Education and Resilience Project 2025 and demonstrates how delivering content via familiar networks promotes engagement, learning and resilience.
Individuals living with Fabry face challenges in understanding their condition, managing treatment and navigating social and healthcare systems. Peer support and community education are key tools to enhance self-advocacy, resilience and well-being. Accessible, ongoing education helps empower people to live well with Fabry disease.
The core objective was to develop the Fabry Education and Resilience Project, a community-led, peer-supported education programme on:
Understanding of Fabry disease and its management
Confidence in self-advocacy and communication with healthcare professionals
Engagement with peer support networks and MPS Society initiatives
Delivering content via familiar networks promoted engagement, learning and resilience. Increased peer participation and membership suggest this model may be transferable to other rare disease communities, supporting advocacy, self-management and well-being.
At the International MPS Symposium 2026 in Florence, the poster won the Best Poster Award for in the category patient and family experience.
