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

Past events

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”