Throughout 2025, the MPS Society’s Fabry Education and Resilience Project brought together the UK Fabry community to share knowledge, ask questions and support one another.
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.
We summarised the findings shared in an interactive report for a scientific poster presentation as part of the International MPS Symposium 2026 in Florence, where it won the Best Poster Award for patient and family experience.
