XLH UK supports those with X-linked hypophosphataemia and related disorders.

Breaking news! NICE recommend burosumab for adults with XLH

Connecting XLH Groups across the world

Connecting XLH Groups across the world

  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 leading the discussions. The alliance is...

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Genomics England’s Generation Study

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....

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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 Kirin...

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