Nov 29, 2023
NICE has released draft guidance on the Health Technology Assessment of burosumab for adults in England.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. ...
Feb 15, 2023
Scotland agrees access to burosumab for adults XLH UK founder Oliver Gardiner: “This is fantastic news for adults with XLH in Scotland and is a leap forward, setting a precedent as the first of the UK nations to recommend burosumab for the eligible adult population....
Sep 15, 2022
Latest news regarding NICE’s Topic Selection of using burosumab in XLH adults (September 2022) Background You may already be aware that XLH UK have been working hard to represent patient views to NICE since March 2021. We have also liaised closely with select expert...
Oct 23, 2021
Today is International XLH Awareness Day!!! Earlier this year we surveyed 350 adults with XLH to look at the current care standards that we receive. Comparing the current care standards to the clinical recommendations for the care and management of XLH (Haffner D, et...
Feb 10, 2020
Children and adolescents with XLH will now be able to access burosumab on the NHS in Scotland >> Link to download Press Release << London, England, February 10, 2020. XLH UK, a nonprofit trust representing patients with XLH in the United Kingdom...
