Nov 14, 2022
Welcome to XLH’s first newsletter called ‘Navigator’. XLH UK was set up to help those with XLH and related disorders within the UK through research, support and advocacy. We hope that a regular newsletter will help you to navigate your way through...
Oct 23, 2021
Today is International XLH Awareness Day!!! Earlier this year we surveyed 350 adults with XLH to look at the current care standards that we receive. Comparing the current care standards to the clinical recommendations for the care and management of XLH (Haffner D, et...
Nov 30, 2020
Trustee Sally Hatton on this brilliantly written article on how her challenges with XLH an often with other #rarediseases are sometimes not immediately obvious. The #IAmNumber17 campaign has been critical in providing a platform for the #patientvoice allowing those...
Sep 24, 2020
We are excited to have worked with Health Awareness on their 2020 Rare Diseases campaign. The campaign features exclusive content on XLH UK and the International XLH Alliance, discussing the impact of late diagnosis and the stigma often associated to our rare disease...
May 21, 2020
>> Link to view paper online << Delighted to be sharing a new publication that XLH UK and XLH Network was involved in. A lot of you here were instrumental in participating in the study and I’d like to thank you all for your input ! The study...
