XLH UK strategy day in London

XLH UK strategy day in London

  On Saturday 11th January, some of the trustees of XLH UK came together in London to reflect on everything that had happened in 2024 and a great year for our community! We celebrated the progress made in raising awareness and supporting the XLH community,...
Research Paper on XLH Quality of Life

Research Paper on XLH Quality of Life

Research shows impact of XLH on quality of life XLH UK have collaborated with Triangulate Health to scientifically verify the research evidence regarding the impact of XLH on the lives of XLH patients and those of their families. Titled ‘Exploring Perspectives...
NHS guidelines for adults on burosumab

NHS guidelines for adults on burosumab

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...
Connecting XLH Groups across the world

Connecting XLH Groups across the world

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...
Genomics England’s Generation Study

Genomics England’s Generation Study

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...
New research released

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...