Connect event – January
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
12 events found.
Events
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Zoom (online meeting)
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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 […]
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XLH Connect – March 2024
Zoom (online meeting)Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or to […]
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Canceled Connect – April 2024
Zoom (online meeting)SORRY< THIS EVENT HAS BEEN CANCELLED DUE TO ILLNESS Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions […]
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Connect – May 2024
Zoom (online meeting)Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or to […]
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XLH UK Community Day 2024
National Conference Centre, Birmingham Coventry Road, United KingdomOur 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, […]
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Special Webinar: NICE Guidance explained
Zoom (online meeting)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 […]
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Special Webinar: NICE Implementation and Q&A
Zoom (online meeting)Please mark your calendars to join this special webinar where we will be explaining the NICE implemenation plan followed by a Q&A. Please register for the Zoom meeting ahead of time: https://zoom.us/meeting/register/tJYrcuGhqzsqHteS2LP3ZJ8IkLBrRlH9wDnL
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Canceled Connect – September 2024
Zoom (online meeting)Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or […]
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Connect – October 2024
Zoom (online meeting)Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or to […]
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Connect – November 2024
Zoom (online meeting)Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration. Following requests to have more opportunities to meet others in the community, we host discussions for you to share your experience of XLH, or to […]
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Burosumab for Adults rollout
Zoom (online meeting)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 […]