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X-ORIGINAL-URL:https://xlhuk.org
X-WR-CALDESC:Events for XLH UK
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DTSTART:20240101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20250601T110000
DTEND;TZID=UTC:20250601T150000
DTSTAMP:20260417T023909
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
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