Our recent XLH Community Day in Manchester was a great success, bringing together members for a day of learning, friendship and shared experiences.

The event provided an opportunity for people who have XLH to connect with others who understand the challenges and triumphs of living with the condition, while also hearing about the latest developments in research and care.

We were delighted to welcome two inspiring guest speakers.

Dr Raja Padidela provided an overview of XLH, explaining how the condition affects bone development and highlighting advances in treatment, including the impact of burosumab and current approaches to care throughout childhood and adulthood.

Dr Fiona Kirkham-Wilson shared progress from the RUDY Study, including recent findings on joint stiffness in XLH. She also unveiled the new-look RUDY website for people living with XLH and highlighted how participants are helping to guide future research and improve understanding of the condition.

As always, the real joy of the day was the opportunity to reconnect with friends, meet new families and strengthen the relationships that make the XLH community so special. Younger attendees had a fantastic time throughout the day, with the face painter proving to be one of the most popular attractions, and not just with the children!

A huge thank you to everyone who attended, volunteered, spoke and contributed to making the day such a success. Your enthusiasm, generosity and willingness to share your experiences are what make events like these so meaningful.