Aug 18, 2021
We are very excited to support Paralympian XLH’er Jennyfer Parinos at this year’s games in Tokyo. Coverage for Table Tennis starts on Wednesday the 25th of August on Channel 4. Wishing you @jennymarxx the best of luck. Jennyfer Parinos, Tokyo 2020 We are...
Apr 24, 2021
Hi all, there have been lots of developments in the last 4 months that I am keen to share with you. Firstly, earlier in the year we joined NICE’s Scientific Advice committee to offer insights and advice on experiences and challenges that adults with XLH are faced...
Oct 23, 2020
This webinar was organised to draw attention to the urgent challenges facing adults with XLH by sharing views from patient organisations, clinicians and researchers. We hope to provide information on the unmet needs of adults with XLH, and to give evidence on current...
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...
Feb 10, 2020
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...
Oct 13, 2019
>> Link to Survey << We want to hear from people who have experience of living with inheritable hypophosphatemia’s about what it is like to live with the condition and their experience of current drug treatments and supporting care. Your...
