At a recent Senedd roundtable event, Oliver Gardiner, representing XLH UK, and Claire Lewis, a Welsh XLH patient, were joined by Mike Hedges MS. Mike Hedges, who chairs the Senedd Cross Party Group on Rare Diseases, brought invaluable expertise and leadership to the discussions. Together, they shed light on the Wales Rare Diseases Action Plan 2022-2026 Priority 3, emphasising the critical need for coordinated care for rare conditions, including the involvement of multidisciplinary teams.

The session, which also featured insights from Claire Lewis on the impact of XLH on her family, provided a holistic perspective on the path forward for improved care coordination and support for rare disease communities across the region.