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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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BEGIN:VTIMEZONE
TZID:UTC
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TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20090101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20231202T100000
DTEND;TZID=UTC:20231202T110000
DTSTAMP:20260507T225000
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DESCRIPTION:In this webinar\, we hear about the NICE draft guidance regarding access to burosumab for adults in England.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:20260507T225000
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20230510
DTEND;VALUE=DATE:20230511
DTSTAMP:20260507T225000
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:20260507T225000
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191012
DTEND;VALUE=DATE:20191013
DTSTAMP:20260507T225000
CREATED:20230823T095428Z
LAST-MODIFIED:20231018T212311Z
UID:513-1570838400-1570924799@xlhuk.org
SUMMARY:Metabolic Support and XLH UK\, Birmingham
DESCRIPTION:
URL:https://xlhuk.org/event/metabolic-support-and-xlh-uk-birmingham/
CATEGORIES:Past Events
ATTACH;FMTTYPE=image/jpeg:https://xlhuk.org/wp-content/uploads/2023/08/MSUK-annual-conference-Oct.2019.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190406
DTEND;VALUE=DATE:20190407
DTSTAMP:20260507T225000
CREATED:20230823T095546Z
LAST-MODIFIED:20231018T212148Z
UID:515-1554508800-1554595199@xlhuk.org
SUMMARY:XLH Patient Information Day\, Medialis and XLH UK and Birmingham Women’s and Children’s NHS Foundation Trust
DESCRIPTION:
URL:https://xlhuk.org/event/xlh-patient-information-day-medialis-and-xlh-uk-and-birmingham-womens-and-childrens-nhs-foundation-trust/
CATEGORIES:Past Events
ATTACH;FMTTYPE=image/jpeg:https://xlhuk.org/wp-content/uploads/2023/08/IMG_5341-scaled.jpeg
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20171014
DTEND;VALUE=DATE:20171015
DTSTAMP:20260507T225000
CREATED:20230823T095636Z
LAST-MODIFIED:20231018T212413Z
UID:517-1507939200-1508025599@xlhuk.org
SUMMARY:Climb\, XLH UK and Central Manchester Healthcare Trust. Birmingham
DESCRIPTION:
URL:https://xlhuk.org/event/climb-xlh-uk-and-central-manchester-healthcare-trust-birmingham/
CATEGORIES:Past Events
ATTACH;FMTTYPE=image/png:https://xlhuk.org/wp-content/uploads/2023/08/Salby-Climb-event-2017.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20130914
DTEND;VALUE=DATE:20130915
DTSTAMP:20260507T225000
CREATED:20230823T095715Z
LAST-MODIFIED:20230823T095715Z
UID:519-1379116800-1379203199@xlhuk.org
SUMMARY:XLH UK and XLH Network\, Inc. The Vyne Basingstoke
DESCRIPTION:
URL:https://xlhuk.org/event/xlh-uk-and-xlh-network-inc-the-vyne-basingstoke/
CATEGORIES:Past Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20120908
DTEND;VALUE=DATE:20120909
DTSTAMP:20260507T225000
CREATED:20230823T095747Z
LAST-MODIFIED:20231018T214234Z
UID:521-1347062400-1347148799@xlhuk.org
SUMMARY:XLH UK and XLH Network\, Inc. Basildon Park. Reading
DESCRIPTION:
URL:https://xlhuk.org/event/xlh-uk-and-xlh-network-inc-basildon-park-reading/
CATEGORIES:Past Events
ATTACH;FMTTYPE=image/jpeg:https://xlhuk.org/wp-content/uploads/2023/08/home_template1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20101016
DTEND;VALUE=DATE:20101017
DTSTAMP:20260507T225000
CREATED:20230823T095824Z
LAST-MODIFIED:20231018T220322Z
UID:523-1287187200-1287273599@xlhuk.org
SUMMARY:The first XLH families meet\, Brightwell-cum-Sotwell\, Oxfordshire
DESCRIPTION:
URL:https://xlhuk.org/event/the-first-xlh-families-meet-wallingford/
CATEGORIES:Past Events
ATTACH;FMTTYPE=image/jpeg:https://xlhuk.org/wp-content/uploads/2023/08/brightwell-xlh-meeting.jpg
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