Holly runs three half marathons for XLH UK
We're delighted to share an incredible fundraising achievement from Holly Knight, who has now completed three half marathons for XLH UK this year! Earlier in the year, we celebrated her completion of the Gloucester Half Marathon, and she's since gone on to run not...
Celebrating award winning patient stories
Award recognition for XLH UK patient stories! We are excited to share that our patient stories about the impact of XLH on quality of life have been recognised as best in class. Our researchers Joe Bonnell and Rachel Lewis were celebrated for the XLH UK research at the...
Mhairi runs the Lisbon Marathon for XLH UK
We’re sending a huge congratulations to Mhairi Duncan for completing the Lisbon Marathon on 25th October 2025, raising funds and awareness for XLH UK in the process. Mhairi took on this challenge not only as a personal milestone but to support the community. And she's...
Rollout of burosumab pre-filled syringes
To make treatment easier and safer, burosumab will soon be available in a Pre-Filled Syringe (PFS) across the UK, for adult and children patients. The move to pre-filled syringes needs to happen in a careful and responsible way, because the existing stock of...
Amy’s Story: A Personal Journey of Family Planning with XLH
We are pleased to share with you a new patient story in which we hear from Amy, who opens up about the personal choices she made when starting her family. Amy has XLH and, after careful consideration, chose IVF to ensure that her two daughters would not carry the XLH...
Northern Ireland has a successful XLH Family Day
On Saturday 21st June, Northern Ireland had its own XLH Family Day and it was a brilliant success! The event brought together families affected by XLH for a day of connection, support, and community. We've been told the feedback from parents was really positive, and...
Community Day 2025
STOP PRESS! Speakers announced We are delighted to confirm the speakers at the next XLH UK Community Day on Sunday 1st June 2025. There is still time to register for the event here. Keynote Speaker - Professor Kassim Javaid on the new Oxford University research...
Holly runs the Gloucester Half Marathon for XLH UK
We’re sending huge congratulations to Holly Knight, who completed the Gloucester Half Marathon on 30th March 2025 in support of XLH UK! This cause is a personal one for Holly and her family, after her five-year-old son Sebastian was diagnosed with XLH last year...
Rare Disease Day 2025: Stronger Together
On February 28th 2025, we marked Rare Disease Day, a time to raise awareness and support for the 300 million people worldwide living with rare conditions. This year’s theme, Stronger Together, highlighted the power of community in driving change. To celebrate, the...
XLH UK strategy day in London
On Saturday 11th January, some of the trustees of XLH UK came together in London to reflect on everything that had happened in 2024 and a great year for our community! We celebrated the progress made in raising awareness and supporting the XLH community,...
Research Paper on XLH Quality of Life
XLH UK have collaborated with Triangulate Health to scientifically verify the research evidence regarding the impact of XLH on the lives of XLH patients and those of their families. Titled 'Exploring Perspectives of People with XLH: Insights into Disease Impact, Daily...
NHS guidelines for adults on burosumab
The NHS has now published guidelines so that specialists can prescribe burosumab to UK adults with a diagnosis of XLH. You can watch the recording of a webinar that XLH UK ran, to provide more information about the implementation of the guidelines. We also have a...
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...
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....
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...
NICE decision gives UK-wide access to burosumab
XLH UK is delighted to report that adults living with XLH in England, Wales and Northern Ireland will now have access to burosumab, the first available treatment to tackle the underlying cause of XLH. The decision by NICE ensures equal access to burosumab across the...
XLH UK Community event is announced
We are pleased to announce that the next XLH UK Community Day will take place on Sunday 2nd June 2024. Our annual event will be bigger and better than ever. For how the day went, follow the link here. It will be held at the National Conference Centre, Birmingham. The...
XLH UK Interviews gymnast Kieron Innes
We kicked off 2024 chatting with 17-year-old Kieron Innes, a talented gymnast living with XLH. Kieron was diagnosed with XLH when he was already years into his impressive gymnastics journey. In the interview, we hear about some of the tough mental and physical...
Making the XLH Patient Stories
In 2023, XLH UK collaborated with Joe Bonnell, a photographic ethnographer, and filmmaker Rachel Lewis to capture the stories of some of the XLH community. I sat down with Sarah Mitson, Chair of XLH UK, to explore the motivation behind commissioning these powerful...
Scotland confirms burosumab for children
XLH UK is pleased to to report that the Scottish Medicines Consortium (SMC) has confirmed access to burosumab (marketed as Crysvita) for the treatment of X-linked hypophosphataemia (XLH) in children and adolescents aged 1 to 17 years with radiographic evidence of bone...