Latest news regarding NICE’s Topic Selection of using burosumab in XLH adults (September 2022) Background You may already be aware that XLH UK have been working hard to represent patient views to NICE since March 2021. We have also liaised closely with select expert clinicians, so that NICE has reliable information with which to make …
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 al. Nat Rev Nephrol 2019;15(7):435-455.) the alliance found clear areas for …
Children and adolescents with XLH will now be able to access burosumab on the NHS in Scotland >> Link to download Press Release << London, England, February 10, 2020. XLH UK, a nonprofit trust representing patients with XLH in the United Kingdom and Ireland, is looking forward to a brighter future now that the Scottish Medicines Consortium …
Final Recommendation We are absolutely thrilled to announce this morning that burosumab has been APPROVED for routine use on our NHS for children from 1 years up to young adults aged 16/17 years. This news completely changes the landscape for the estimated 250 children living with XLH in the UK. Burosumab will be the first …
