In this webinar, we hear about the NICE draft guidance regarding access to burosumab for adults in England. We hear about why it is important for the community to raise their voice and how you can contribute to the evidence. The video can be watched again on You Tube on our channel @XLHUK
Our 2024 Community Day was a great success! Held on Sunday 2nd June at the National Conference Centre, Birmingham we had the highest attendance ever and enjoyed a sunny day in a light and airy venue. We had an informative talk from Professor Kassim Javaid who shared the latest medical thinking on XLH. Luke Jenkinson, […]
Burosumab is a relatively new treatment, which has been fully approved as an effective treatment for both children and adults. It is the only treatment that deals with the root cause of X-linked hypophosphataemia. In people with XLH, the hormone fibroblast growth factor 23 (FGF23) is overactive, which signals to decrease the phosphate in the […]
In this webinar, we will hear about the NHS guidelines on burosumab for adults in England. We will cover how it will be rolled out and information for those starting burosumab. You can watch the webinar on our You Tube channel: @XLHUK There is a patient leaflet to help those starting on burosumab. You can […]
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 […]