12 events found.
Past Events
XLH UK Family Day, Manchester
We were delighted to welcome almost 50 people to our Family Day at The Macdonald Manchester Hotel. From Jim’s engaging session on ‘Living with XLH’ to Adrian’s discussion about PIP, the information was helpful throughout. Oliver provided a brief overview for new medication approval processes across the UK and explained about the importance of adding […]
XLH UK Family Day, Bristol
Our 2023 Family Day was held at Engineers' House in Central Bristol. People of all ages attended, and it was a wonderfully friendly meeting with lots of opportunity to socialise and share experiences. Dr Matthew Roy’s informative session ‘The use of Burosumab in adults: a Bristol experience’ was a particular hi-light along with the presentation […]
Special Webinar – Call to Action + Q&A
Zoom (online meeting)In this webinar, we hear about the NICE draft guidance regarding access to burosumab for adults in England.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
London Meet & Greet
Parcel Yard Kings Cross Station, LondonThe trustees of XLH UK were in London on Saturday 27th January 2024. They met to review 2023 and to agree the plan for 2024. You can see more about this if you go here. After the meeting we went to the Parcel Yard at King's Cross for lunch and to meet the any Londoners […]
XLH UK Community Day 2024
National Conference Centre, Birmingham Coventry Road, United KingdomOur 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, […]
Special Webinar: NICE Guidance explained
Zoom (online meeting)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 […]