Box 1 What is XLH Matters?

XLH Matters is an international, annual networking event for clinicians working in XLH across a range of specialities and geographical regions. The XLH Matters series is a forum for international XLH expert clinicians to: share latest clinical research, including real-world data; discuss challenges with managing XLH; and identify approaches to improve the outcomes of people living with XLH. The inaugural XLH Matters was held virtually in 2021, with the second meeting held in person in Madrid in October 2022. At XLH Matters 2022, there were 73 in-person attendees representing 18 countries across Europe and the Middle East. The third meeting was planned in June 2023 in Frankfurt and will build on topics discussed during the previous meetings