There is real value in spending time in our community; from picking up useful tips, sharing stories and helping others with XLH to find their way.
Whether you want to join one of our annual Family Days, hear the latest medical updates or join an online support forum, there are a range of events to interest all ages.
For a live calendar of events
If you want to suggest or set up an event for the XLH community in your area, please get in touch by emailing contact@xlhuk.org
Past events
November 2024
Burosumab for Adults rollout
Burosumab for Adults rollout
In this webinar, we will hear about the NHS guidelines on burosumab for adults in England. We will cover how it will be rolled out and information for those starting burosumab.
You can watch the webinar on our You Tube channel: @XLHUK
There is a patient leaflet to help those starting on burosumab. You can download it here.
June 2024
Special Webinar: NICE Guidance explained
Special Webinar: NICE Guidance explained
Burosumab is a relatively new treatment, which has been fully approved as an effective treatment for both children and adults. It is the only treatment that deals with the root cause of X-linked hypophosphataemia. In people with XLH, the hormone fibroblast growth factor 23 (FGF23) is overactive, which signals to decrease the phosphate in the blood, resulting in poor bone mineralisation. Burosumab (marketed as Crysvita) is a monoclonal antibody that suppresses the activity of fibroblast growth factor 23 (FGF23). By suppressing FGF23, burosumab normalises the phosphate levels in the blood, which helps bones and teeth to form properly. Implementation of NHS guidelines to make burosumab available to all UK adults is in the pro...
XLH UK Community Day 2024
XLH UK Community Day 2024
Our 2024 Community Day was a great success! Held on Sunday 2nd June at the National Conference Centre, Birmingham we had the highest attendance ever and enjoyed a sunny day in a light and airy venue.
We had an informative talk from Professor Kassim Javaid who shared the latest medical thinking on XLH. Luke Jenkinson, a trained physiotherapist, shared his perspective on how physiotherapy and exercise can help those with XLH manage pain and improve recovery from surgery. Kieron Innes, a talented young gymnast with XLH, shared with us how his sporting career is developing.
After the traditional group photo and a delicious lunch, there was the opportunity to chat. The children were delighted with the face painting and the opportunity to blow bubbles around the courtyard with a surprise appearance from Princess Ariel. The slides from the event are available here.
January 2024
London Meet & Greet
London Meet & Greet
The trustees of XLH UK were in London on Saturday 27th January 2024. They met to review 2023 and to agree the plan for 2024. You can see more about this if you go here. After the meeting we went to the Parcel Yard at King's Cross for lunch and to meet the any Londoners who wanted to chat.
December 2023
Special Webinar - Call to Action + Q&A
Special Webinar - Call to Action + Q&A
In this webinar, we hear about the NICE draft guidance regarding access to burosumab for adults in England. We hear about why it is important for the community to raise their voice and how you can contribute to the evidence. The video can be watched again on You Tube on our channel @XLHUK
May 2023
XLH UK Family Day, Bristol
XLH UK Family Day, Bristol
Our 2023 Family Day was held at Engineers' House in Central Bristol. People of all ages attended, and it was a wonderfully friendly meeting with lots of opportunity to socialise and share experiences. Dr Matthew Roy’s informative session ‘The use of Burosumab in adults: a Bristol experience’ was a particular hi-light along with the presentation to our amazing fundraiser Jennie McILmail and her Battleborn coach JB. Patient stories were shared throughout the day, and we discussed the launch of the online service XLH Connect to offer new opportunities for engagement within our community. Entertainment-wise, Miss Balloonatron’s creations wowed everyone, keeping her very busy throughout her visit!
“Thanks to all involved for organising this - had another great meet-up! Roll on the next!”
October 2022
XLH UK Family Day, Manchester
XLH UK Family Day, Manchester
We were delighted to welcome almost 50 people to our Family Day at The Macdonald Manchester Hotel. From Jim’s engaging session on ‘Living with XLH’ to Adrian’s discussion about PIP, the information was helpful throughout. Oliver provided a brief overview for new medication approval processes across the UK and explained about the importance of adding the audience’s feedback to active surveys. After a presentation to Leo’s Mission – who have been amazing supporters of XLH UK in raising awareness and funds - we opened the room for lunch and for the children to enjoy the face-painting and balloons.
“I had never met anyone else with XLH before and comparing experiences and chatting with others who also have it has been amazing”
