XLH UK Community event is announced

XLH UK Community event is announced

Registration is open! Sunday 2nd June We are pleased to announce that the next XLH UK Community Day will take place on Sunday 2nd June 2024. Our annual event will be bigger and better than ever – for free registration please follow the link here. It will be held...
Scotland confirms burosumab for children

Scotland confirms burosumab for children

Scotland confirms burosumab for children XLH UK is pleased to to report that the Scottish Medicines Consortium (SMC) has confirmed access to burosumab (marketed as Crysvita) for the treatment of X-linked hypophosphataemia (XLH) in children and adolescents aged 1 to 17...
XLH UK campaign on BBC News

XLH UK campaign on BBC News

As part of our Call to Action, members of the XLH community have been talking to the press about the draft guidance from NICE to reject burosumab for adult patients. We are thrilled to see that our message has been highlighted by both BBC Wales and BBC NorthWest! You...
NICE guidance rejects burosumab for adults

NICE guidance rejects burosumab for adults

NICE has released draft guidance on the Health Technology Assessment of burosumab for adults in England. Their evaluation and XLH UK’s response is explained in the press release below, along with a five step Call to Action! for all members of the XLH community. ...
XLH UK Newsletter – October 2023

XLH UK Newsletter – October 2023

Welcome to XLH’s Navigator newsletter for Autumn 2023. Hear about our recent Connect meeting and a visit to the Welsh Parliament. Don’t miss the next newsletter and subscribe here: https://xlhuk.org/registration-form/ You can view it here:...