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 and conducted by Acaster Lloyd Consulting. It provides a better understanding of the wider burden of XLH on the whole family and evidences the need for more support to be given to informal carers.

The research would not have been possible without contributions from the XLH UK patient community. The full paper will be made available in our Research library once it is published.

You can see and share the infographic which summarises the research results here.