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X-WR-CALNAME:XLH UK
X-ORIGINAL-URL:https://xlhuk.org
X-WR-CALDESC:Events for XLH UK
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DTSTART:20230101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240602T110000
DTEND;TZID=UTC:20240602T150000
DTSTAMP:20260419T110251
CREATED:20240309T115623Z
LAST-MODIFIED:20240607T080312Z
UID:29617-1717326000-1717340400@xlhuk.org
SUMMARY:XLH UK Community Day 2024
DESCRIPTION: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. \nWe 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. \nAfter 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.
URL:https://xlhuk.org/event/xlh-uk-community-day/
LOCATION:National Conference Centre\, Birmingham\, Coventry Road\, B92 0EJ\, United Kingdom
CATEGORIES:Conference and webinar,Past Events
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2024/06/Group-550-x-350-px.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240629T110000
DTEND;TZID=UTC:20240629T120000
DTSTAMP:20260419T110251
CREATED:20240621T041238Z
LAST-MODIFIED:20250210T114659Z
UID:29941-1719658800-1719662400@xlhuk.org
SUMMARY:Special Webinar: NICE Guidance explained
DESCRIPTION: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. \nIn 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. \nImplementation of NHS guidelines to make burosumab available to all UK adults is in the process of being rolled out – find out more by clicking here.
URL:https://xlhuk.org/event/special-webinar-on-nice-guidance/
LOCATION:Zoom (online meeting)
CATEGORIES:Conference and webinar,Past Events
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2024/06/500x350.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
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