• 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 […]

  • Special Webinar: NICE Implementation and Q&A

    Zoom (online meeting)

    Please mark your calendars to join this special webinar where we will be explaining the NICE implemenation plan followed by a Q&A. Please register for the Zoom meeting ahead of time: https://zoom.us/meeting/register/tJYrcuGhqzsqHteS2LP3ZJ8IkLBrRlH9wDnL

  • Canceled Connect – September 2024

    Zoom (online meeting)

    Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or […]

  • Connect – October 2024

    Zoom (online meeting)

    Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or to […]

  • Connect – November 2024

    Zoom (online meeting)

    Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or to […]

  • 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 […]

  • Connect – December 2024

    Zoom (online meeting)

    Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or […]

  • Connect – February 2025

    Zoom (online meeting)

    Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or […]

  • Connect – March 2025

    Zoom (online meeting)

    Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or […]

  • Connect – April 2025

    Zoom (online meeting)

    Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or […]

  • Connect – May 2025

    Zoom (online meeting)

    Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or […]

  • XLH UK Community Day 2025

    The Lowry, Salford Pier 8, The Quays, Salford, Manchester, 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 […]