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X-WR-CALDESC:Events for XLH UK
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260421T180000
DTEND;TZID=UTC:20260421T190000
DTSTAMP:20260507T111148
CREATED:20260414T185929Z
LAST-MODIFIED:20260414T190203Z
UID:30702-1776794400-1776798000@xlhuk.org
SUMMARY:Connect with an Expert
DESCRIPTION:Following the success of our last Connect with a Expert\, Professor Kassim Javaid – Professor of Osteoporosis and Adult Rare Bone Diseases – will be joining us to discuss the complex relationship between XLH and Parathyroid hormone. \nThey’ll be a Q&A\, so plenty of opportunity to ask any questions you may have. Put the kettle on and join us at 6pm! \nZoom link below. \n 
URL:https://xlhuk.org/event/connect-with-an-expert/
LOCATION:Online
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260323T180000
DTEND;TZID=UTC:20260323T190000
DTSTAMP:20260507T111148
CREATED:20260319T093309Z
LAST-MODIFIED:20260323T161313Z
UID:30670-1774288800-1774292400@xlhuk.org
SUMMARY:Connect with an Expert - 23rd March 2026
DESCRIPTION: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 listen to what others have experienced. \nThis Connect with an Expert will take place on Zoom on Monday 23rd March from 18.00-19.00. \nPlease register in advance to join via Zoom here. https://zoom.us/meeting/register/hjixy0jOToSUfOWCtpxIXw
URL:https://xlhuk.org/event/connect-with-an-expert-23rd-march-2026/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/jpeg:https://xlhuk.org/wp-content/uploads/2026/03/Copy-of-Connect-Icon-Facebook-Post.jpg
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251112T180000
DTEND;TZID=UTC:20251112T190000
DTSTAMP:20260507T111148
CREATED:20250617T170230Z
LAST-MODIFIED:20251104T140715Z
UID:30439-1762970400-1762974000@xlhuk.org
SUMMARY:Connect - 12th November 2025
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 12th November from 18.00-19.00. \nIf you want to join\, you need to register in advance.  \nTo register with Zoom please CLICK HERE
URL:https://xlhuk.org/event/connect-november-2025/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/09/Connect-Icon.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251001T190000
DTEND;TZID=UTC:20251001T200000
DTSTAMP:20260507T111148
CREATED:20250617T165833Z
LAST-MODIFIED:20250617T171504Z
UID:30437-1759345200-1759348800@xlhuk.org
SUMMARY:Connect - October 2025
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 1st October from 19.00-20.00. \nIf you want to join\, you need to register in advance.  \nTo register with Zoom please CLICK HERE
URL:https://xlhuk.org/event/connect-october-2025/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/09/Connect-Icon.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250903T180000
DTEND;TZID=UTC:20250903T190000
DTSTAMP:20260507T111148
CREATED:20250617T165345Z
LAST-MODIFIED:20250617T165345Z
UID:30435-1756922400-1756926000@xlhuk.org
SUMMARY:Connect - September 2025
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 3rd September from 18.00-19.00. \nIf you want to join\, you need to register in advance.  \nTo register with Zoom please CLICK HERE
URL:https://xlhuk.org/event/connect-september-2025/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/09/Connect-Icon.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250806T190000
DTEND;TZID=UTC:20250806T200000
DTSTAMP:20260507T111148
CREATED:20250617T164948Z
LAST-MODIFIED:20250617T164948Z
UID:30433-1754506800-1754510400@xlhuk.org
SUMMARY:Connect - August 2025
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 6th August from 19.00-20.00. \nIf you want to join\, you need to register in advance.  \nTo register with Zoom please CLICK HERE
URL:https://xlhuk.org/event/connect-august-2025/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/09/Connect-Icon.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250702T180000
DTEND;TZID=Europe/London:20250702T190000
DTSTAMP:20260507T111148
CREATED:20250617T164143Z
LAST-MODIFIED:20250617T164143Z
UID:30431-1751479200-1751482800@xlhuk.org
SUMMARY:Connect - July 2025
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 2nd July from 18.00-19.00. \nIf you want to join\, you need to register in advance.  \nTo register with Zoom please CLICK HERE
URL:https://xlhuk.org/event/connect-july-2025/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/09/Connect-Icon.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250621T103000
DTEND;TZID=UTC:20250621T143000
DTSTAMP:20260507T111148
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:20260507T111148
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=Europe/London:20250507T180000
DTEND;TZID=Europe/London:20250507T190000
DTSTAMP:20260507T111148
CREATED:20250102T161051Z
LAST-MODIFIED:20250102T161051Z
UID:30245-1746640800-1746644400@xlhuk.org
SUMMARY:Connect - May 2025
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 7th May at 6pm. \nIf you want to join\, you need to register in advance.  \nTo register with Zoom please CLICK HERE
URL:https://xlhuk.org/event/connect-may-2025/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250402T180000
DTEND;TZID=Europe/London:20250402T190000
DTSTAMP:20260507T111148
CREATED:20250102T161028Z
LAST-MODIFIED:20250102T161028Z
UID:30243-1743616800-1743620400@xlhuk.org
SUMMARY:Connect - April 2025
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 2nd April at 6pm. \nIf you want to join\, you need to register in advance.  \nTo register with Zoom please CLICK HERE
URL:https://xlhuk.org/event/connect-april-2025/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250305T180000
DTEND;TZID=Europe/London:20250305T190000
DTSTAMP:20260507T111148
CREATED:20250102T160945Z
LAST-MODIFIED:20250102T160945Z
UID:30241-1741197600-1741201200@xlhuk.org
SUMMARY:Connect - March 2025
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 5th March at 6pm. \nIf you want to join\, you need to register in advance.  \nTo register with Zoom please CLICK HERE
URL:https://xlhuk.org/event/connect-march-2025/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250205T180000
DTEND;TZID=Europe/London:20250205T190000
DTSTAMP:20260507T111148
CREATED:20250102T160914Z
LAST-MODIFIED:20250102T160914Z
UID:30239-1738778400-1738782000@xlhuk.org
SUMMARY:Connect - February 2025
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 5th February at 6pm. \nIf you want to join\, you need to register in advance. \nTo register with Zoom please CLICK HERE
URL:https://xlhuk.org/event/connect-february-2025/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241204T180000
DTEND;TZID=UTC:20241204T190000
DTSTAMP:20260507T111148
CREATED:20240813T183129Z
LAST-MODIFIED:20240813T185503Z
UID:30053-1733335200-1733338800@xlhuk.org
SUMMARY:Connect - December 2024
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 4th December at 6pm.  The special theme will be Pregnancy. \nIf you want to join\, you need to register in advance.  \nTo register with Zoom please CLICK HERE \n 
URL:https://xlhuk.org/event/connect-december-2024/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241114T180000
DTEND;TZID=UTC:20241114T190000
DTSTAMP:20260507T111148
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:20241106T180000
DTEND;TZID=UTC:20241106T190000
DTSTAMP:20260507T111148
CREATED:20240813T184028Z
LAST-MODIFIED:20240813T185135Z
UID:30050-1730916000-1730919600@xlhuk.org
SUMMARY:Connect - November 2024
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 6th November at 6pm.  The special theme is Mental Health. \nIf you want to join\, you need to register in advance.  \nTo register with Zoom please CLICK HERE \n 
URL:https://xlhuk.org/event/connect-november-2024/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241002T180000
DTEND;TZID=UTC:20241002T190000
DTSTAMP:20260507T111148
CREATED:20240813T184436Z
LAST-MODIFIED:20240813T184436Z
UID:30043-1727892000-1727895600@xlhuk.org
SUMMARY:Connect - October 2024
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 2nd October at 6pm. The special theme will be Exercise and Weight Management. \nIf you want to join\, you need to register in advance.  \nTo register with Zoom please CLICK HERE \n 
URL:https://xlhuk.org/event/connect-october-2024/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240903T180000
DTEND;TZID=UTC:20240903T190000
DTSTAMP:20260507T111148
CREATED:20240813T184735Z
LAST-MODIFIED:20240831T080526Z
UID:30034-1725386400-1725390000@xlhuk.org
SUMMARY:Connect - September 2024
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Tuesday 22nd May at 6pm.  The special theme will be burosumab. \nUnfortunately this Connect session has had to be cancelled because of illness.  \n  \n 
URL:https://xlhuk.org/event/connect-september-2024/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240727T110000
DTEND;TZID=UTC:20240727T110000
DTSTAMP:20260507T111148
CREATED:20240621T041752Z
LAST-MODIFIED:20240622T091141Z
UID:29945-1722078000-1722078000@xlhuk.org
SUMMARY:Special Webinar: NICE Implementation and Q&A
DESCRIPTION:Please mark your calendars to join this special webinar where we will be explaining the NICE implemenation plan followed by a Q&A. \nPlease register for the Zoom meeting ahead of time: https://zoom.us/meeting/register/tJYrcuGhqzsqHteS2LP3ZJ8IkLBrRlH9wDnL
URL:https://xlhuk.org/event/special-webinar-on-nice-news-implementation-and-qa/
LOCATION:Zoom (online meeting)
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240629T110000
DTEND;TZID=UTC:20240629T120000
DTSTAMP:20260507T111148
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:20260507T111148
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:20240522T180000
DTEND;TZID=UTC:20240522T190000
DTSTAMP:20260507T111148
CREATED:20240514T083951Z
LAST-MODIFIED:20240514T083955Z
UID:29882-1716400800-1716404400@xlhuk.org
SUMMARY:Connect - May 2024
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 22nd May at 6pm. \nIf you want to join you need to register in advance.  \nTo register with Zoom please CLICK HERE \n 
URL:https://xlhuk.org/event/connect-may-2024/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240424T180000
DTEND;TZID=UTC:20240424T190000
DTSTAMP:20260507T111148
CREATED:20240228T155451Z
LAST-MODIFIED:20240424T132007Z
UID:29610-1713981600-1713985200@xlhuk.org
SUMMARY:Connect - April 2024
DESCRIPTION:SORRY< THIS EVENT HAS BEEN CANCELLED DUE TO ILLNESS \nOur 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 listen to what others have experienced. This Connect will take place on Zoom on Wednesday 24th April at 6pm. If you want to join you need to register in advance. To register with Zoom please CLICK HERE
URL:https://xlhuk.org/event/connect-community-april24/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/09/Connect-Icon.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240313T180000
DTEND;TZID=UTC:20240313T190000
DTSTAMP:20260507T111148
CREATED:20240227T194611Z
LAST-MODIFIED:20240307T130934Z
UID:29608-1710352800-1710356400@xlhuk.org
SUMMARY:XLH Connect - March 2024
DESCRIPTION: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 listen to what others have experienced. \nThis Connect will take place on Zoom on Wednesday 13th March at 6pm. \nIf you want to join you need to register in advance.  \nTo register with Zoom please CLICK HERE
URL:https://xlhuk.org/event/community-connect-march24/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/09/Connect-Icon.png
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240127T140000
DTEND;TZID=UTC:20240127T160000
DTSTAMP:20260507T111148
CREATED:20240106T140242Z
LAST-MODIFIED:20240130T174008Z
UID:29432-1706364000-1706371200@xlhuk.org
SUMMARY:London Meet & Greet
DESCRIPTION:The 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. \nAfter the meeting we went to the Parcel Yard at King’s Cross for lunch and to meet the any Londoners who wanted to chat.
URL:https://xlhuk.org/event/london-meet-greet/
LOCATION:Parcel Yard\, Kings Cross Station\, London\, N1C 4AH
CATEGORIES:Meet & Greet,Past Events
ATTACH;FMTTYPE=image/jpeg:https://xlhuk.org/wp-content/uploads/2024/01/20240127_160048.jpg
ORGANIZER;CN="XLH UK":MAILTO:contact@xlhuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240122T180000
DTEND;TZID=UTC:20240122T190000
DTSTAMP:20260507T111148
CREATED:20231006T183724Z
LAST-MODIFIED:20240107T191846Z
UID:758-1705946400-1705950000@xlhuk.org
SUMMARY:Connect event - January
DESCRIPTION:Join us online for an informal discussion with other members of the XLH community. \nTo join you must register through Zoom by clicking this link https://zoom.us/meeting/register/tJ0ucemtpz4tHdRgXPhLY7V3r5M-_RvHt0bQ
URL:https://xlhuk.org/event/connect-event-january-2024/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231202T100000
DTEND;TZID=UTC:20231202T110000
DTSTAMP:20260507T111148
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
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/11/Event-templates.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231121T180000
DTEND;TZID=UTC:20231121T190000
DTSTAMP:20260507T111148
CREATED:20231006T180800Z
LAST-MODIFIED:20231121T163429Z
UID:751-1700589600-1700593200@xlhuk.org
SUMMARY:Connect event - November
DESCRIPTION:Register today at: https://zoom.us/meeting/register/tJ0vf-6ppz0tHNfo78W5rkCykMknI1IG3WSL
URL:https://xlhuk.org/event/connect-event-november-2023/
LOCATION:Zoom (online meeting)
CATEGORIES:Online Support Meeting
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/10/Connect-550x350-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230510
DTEND;VALUE=DATE:20230511
DTSTAMP:20260507T111148
CREATED:20230823T084616Z
LAST-MODIFIED:20230823T084616Z
UID:501-1683676800-1683763199@xlhuk.org
SUMMARY:XLH UK Family Day\, Bristol
DESCRIPTION: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.\nDr Matthew Roy’s informative session ‘The use of Burosumab in adults: a Bristol experience’ was a particular hi-light along with the presentation to our amazing fundraiser Jennie McILmail and her Battleborn coach JB. Patient stories were shared throughout the day\, and we discussed the launch of the online service XLH Connect to offer new opportunities for engagement within our community. Entertainment-wise\, Miss Balloonatron’s creations wowed everyone\, keeping her very busy throughout her visit! \n“Thanks to all involved for organising this – had another great meet-up! Roll on the next!”
URL:https://xlhuk.org/event/xlh-uk-family-day-bristol/
CATEGORIES:Past Events
ATTACH;FMTTYPE=image/jpeg:https://xlhuk.org/wp-content/uploads/2023/08/14.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221005T080000
DTEND;TZID=UTC:20221005T170000
DTSTAMP:20260507T111148
CREATED:20230823T090010Z
LAST-MODIFIED:20230929T135752Z
UID:507-1664956800-1664989200@xlhuk.org
SUMMARY:XLH UK Family Day\, Manchester
DESCRIPTION: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 the audience’s feedback to active surveys. After a presentation to Leo’s Mission – who have been amazing supporters of XLH UK in raising awareness and funds – we opened the room for lunch and for the children to enjoy the face-painting and balloons. \n“I had never met anyone else with XLH before and comparing experiences and chatting with others who also have it has been amazing”
URL:https://xlhuk.org/event/xlh-uk-family-day-manchester/
CATEGORIES:Past Events
ATTACH;FMTTYPE=image/jpeg:https://xlhuk.org/wp-content/uploads/2023/08/3.jpg
END:VEVENT
END:VCALENDAR