12 events found.
Events
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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 […]
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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 […]
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Connect event – November
Zoom (online meeting)Register today at: https://zoom.us/meeting/register/tJ0vf-6ppz0tHNfo78W5rkCykMknI1IG3WSL
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Special Webinar – Call to Action + Q&A
Zoom (online meeting)In this webinar, we hear about the NICE draft guidance regarding access to burosumab for adults in England.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
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Connect event – January
Zoom (online meeting)Join us online for an informal discussion with other members of the XLH community. To join you must register through Zoom by clicking this link https://zoom.us/meeting/register/tJ0ucemtpz4tHdRgXPhLY7V3r5M-_RvHt0bQ
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London Meet & Greet
Parcel Yard Kings Cross Station, LondonThe 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 […]
