At the end of September, Sally travelled to beautiful Krakow to represent XLH UK at the International XLH Alliance meeting — a yearly gathering of organisations that support people living with XLH around the world. Attendees came from across Europe, Hong Kong, Canada, and several South American countries, all sharing one goal: making life better for everyone living with XLH.

Over two days, the group talked about how working together internationally can improve information, diagnosis, treatment, and day‑to‑day support. There was also a chance to celebrate how far the Alliance has come in almost ten years — including the early work of our own Oliver Gardiner — and to plan how the global community can keep growing stronger.

For many, the best part was simply meeting other XLHers face to face. Hearing stories from different countries and healthcare systems was eye‑opening, and the sense of connection in the room was immediate. Conversations were easy, and there was plenty of laughter. As Sally reflected:

“Despite the differences in our backgrounds and local circumstances, the challenges we share and the strengths we find are universal.”

The meeting was a powerful reminder of what happens when the XLH community comes together: shared knowledge, shared hope, and a shared determination to keep pushing for better care for everyone living with XLH.