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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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TZID:UTC
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DTSTART:20220101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20250621T103000
DTEND;TZID=UTC:20250621T143000
DTSTAMP:20260417T050951
CREATED:20250618T122849Z
LAST-MODIFIED:20250618T122849Z
UID:30448-1750501800-1750516200@xlhuk.org
SUMMARY:XLH Northern Ireland Family Day
DESCRIPTION:
URL:https://xlhuk.org/event/xlh-northern-ireland-family-day/
LOCATION:The Holiday Inn Express\, University Street\, Belfast\, The Holiday Inn Express\, University Street\, Belfast\, BT7 1HP
CATEGORIES:Conference and webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250601T110000
DTEND;TZID=UTC:20250601T150000
DTSTAMP:20260417T050951
CREATED:20250423T121341Z
LAST-MODIFIED:20250713T141147Z
UID:30399-1748775600-1748790000@xlhuk.org
SUMMARY:XLH UK Community Day 2025
DESCRIPTION: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. \nWe 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. \nThe children were kept busy with Trainmaster’s great train sets and the opportunity for beautiful facepainting! \nAfter our annual group photo we enjoyed a delicious lunch and an opportunity to spend time together\, share experiences and connect as a community. We’re grateful to everyone who attended and made the event possible – a special thank you to the National Lottery Fund\, whose generous grant allowed us to invite so many of you. We’re already looking forward to the next one!
URL:https://xlhuk.org/event/xlh-uk-community-day-2025/
LOCATION:National Conference Centre\, Birmingham\, Coventry Road\, B92 0EJ\, United Kingdom
CATEGORIES:Conference and webinar,Past Events
ATTACH;FMTTYPE=image/jpeg:https://xlhuk.org/wp-content/uploads/2025/04/xlh2025-159-scaled-e1749991754101.jpg
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241114T180000
DTEND;TZID=UTC:20241114T190000
DTSTAMP:20260417T050951
CREATED:20241101T135841Z
LAST-MODIFIED:20250210T115652Z
UID:30046-1731607200-1731610800@xlhuk.org
SUMMARY:Burosumab for Adults rollout
DESCRIPTION: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. \nYou can watch the webinar on our You Tube channel: @XLHUK \nThere is a patient leaflet to help those starting on burosumab. You can download it here.
URL:https://xlhuk.org/event/burosumab-for-adults-rollout/
LOCATION:Zoom (online meeting)
CATEGORIES:Conference and webinar,Past Events
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2024/07/Injection-500x500-1.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240629T110000
DTEND;TZID=UTC:20240629T120000
DTSTAMP:20260417T050952
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240602T110000
DTEND;TZID=UTC:20240602T150000
DTSTAMP:20260417T050952
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:20231202T100000
DTEND;TZID=UTC:20231202T110000
DTSTAMP:20260417T050952
CREATED:20231129T143540Z
LAST-MODIFIED:20240130T170459Z
UID:29372-1701511200-1701514800@xlhuk.org
SUMMARY:Special Webinar - Call to Action + Q&A
DESCRIPTION: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 
URL:https://xlhuk.org/event/special-webinar-call-to-action-qa/
LOCATION:Zoom (online meeting)
CATEGORIES:Conference and webinar,Past Events
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END:VEVENT
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