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Events

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

Click here
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

June 2025

XLH UK Community Day 2025

Location B92 0EJ, United Kingdom,
A huge thank you to everyone who joined us in Birmingham for our 2025 Community Day on Sunday 1st June! It was fantastic to welcome so many of you in person. The day was filled with insightful talks, great conversations, and a real sense of community.

We heard from Professor Kassim Javaid on the latest clinical XLH updates, how burosumab works, and the RUDY study, amongst other informative topics. We also welcomed Ms Suzanne Sykes, who shared invaluable advice on looking after XLH teeth. A highlight for many was hearing from Rachel, who spoke about life in a rock band while living with XLH - a very inspiring and uplifting session. We also enjoyed watching Amy's personal journey with IVF which offered an insight into family planning with XLH. The slides from the event are available here.

The children were kept busy with Trainmaster's great train sets and the opportunity for beautiful facepaintin...

November 2024

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

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

Location B92 0EJ, United Kingdom,

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

Location N1C 4AH, London,
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

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

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

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”