Nov 19, 2024
Resources are available if you are starting on burosumab The NHS has now published guidelines so that specialists can prescribe burosumab to UK adults with a diagnosis of XLH. You can watch the recording of a webinar that XLH UK ran, to provide more information about...
Sep 26, 2024
XLH Alliance Members Meeting 2024 Post from Sarah Mitson: On the weekend of 21st September, I had the pleasure of attending the International XLH Alliance meeting as the XLH UK representative. Our very own Oliver Gardiner is the Co-Chair of IXLHA and was...
Aug 11, 2024
Exciting News: XLH and other Rare Hypophosphatemias included in Genomics England's Generation Study We are thrilled to announce the launch of the Generation Study, which will test newborns for changes in genes linked to over 200 rare genetic conditions. The research...
Jul 14, 2024
Beyond the patient – understanding the spillover effects of XLH. XLH UK is pleased to have collaborated with researchers on an original study which is the first to identify the impacts of XLH beyond the patient alone. The study was initiated and funded by Kyowa...
Jun 21, 2024
Breaking News! XLH UK is delighted to report that adults living with XLH in England, Wales and Northern Ireland will now have access to burosumab, the first available treatment to tackle the underlying cause of XLH. The decision by NICE ensures equal access to...
Mar 11, 2024
Meet up on 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 how the day went, follow the link here. It will be held at the National...
