XLH UK supports those with X-linked hypophosphataemia and related disorders.
Breaking news! NICE recommend burosumab for adults with XLH
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 is run by Genomics England who partner with the NHS to provide whole genome sequencing diagnostics....
New research released
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 Kirin...
NICE decision gives UK-wide access to burosumab
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 burosumab across the...