In this webinar, we hear about the NICE draft guidance regarding access to burosumab for adults in England.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
Join us online for an informal discussion with other members of the XLH community. To join you must register through Zoom by clicking this link https://zoom.us/meeting/register/tJ0ucemtpz4tHdRgXPhLY7V3r5M-_RvHt0bQ
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 […]
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 […]
SORRY< THIS EVENT HAS BEEN CANCELLED DUE TO ILLNESS 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 […]
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 […]
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 […]
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
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 […]
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 […]
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 […]