XLH UK Community Day 2025

A huge thank you to everyone who joined us in Birmingham for our 2025 Community Day on Sunday 1st June! It was fantastic to welcome so many of you in person. The day was filled with insightful talks, great conversations, and a real sense of community.

We heard from Professor Kassim Javaid on the latest clinical XLH updates, how burosumab works, and the RUDY study, amongst other informative topics. We also welcomed Ms Suzanne Sykes, who shared invaluable advice on looking after XLH teeth. A highlight for many was hearing from Rachel, who spoke about life in a rock band while living with XLH – a very inspiring and uplifting session. We also enjoyed watching Amy’s personal journey with IVF which offered an insight into family planning with XLH. The slides from the event are available here.

The children were kept busy with Trainmaster’s great train sets and the opportunity for beautiful facepainting!

After our annual group photo we enjoyed a delicious lunch and an opportunity to spend time together, share experiences and connect as a community. We’re grateful to everyone who attended and made the event possible – a special thank you to the National Lottery Fund, whose generous grant allowed us to invite so many of you. We’re already looking forward to the next one!