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  • 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    In this webinar, we hear about the NICE draft guidance regarding access to burosumab for adults in England.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, London

    The 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 Kingdom

    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, […]

  • 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 […]

  • Burosumab for Adults rollout

    Zoom (online meeting)

    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 […]

  • XLH UK Community Day 2025

    National Conference Centre, Birmingham Coventry Road, United Kingdom

    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 […]