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PRODID:-//XLH UK - ECPv6.15.17.1//NONSGML v1.0//EN
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X-ORIGINAL-URL:https://xlhuk.org
X-WR-CALDESC:Events for XLH UK
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BEGIN:VEVENT
DTSTART;TZID=UTC:20250601T110000
DTEND;TZID=UTC:20250601T150000
DTSTAMP:20260418T120655
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:20260418T120655
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:20260418T120655
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:20260418T120655
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:20240127T140000
DTEND;TZID=UTC:20240127T160000
DTSTAMP:20260418T120655
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:20231202T100000
DTEND;TZID=UTC:20231202T110000
DTSTAMP:20260418T120655
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;VALUE=DATE:20230510
DTEND;VALUE=DATE:20230511
DTSTAMP:20260418T120655
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:20260418T120655
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:20260418T120655
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:20260418T120655
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20171014
DTEND;VALUE=DATE:20171015
DTSTAMP:20260418T120655
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:20260418T120655
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:20260418T120655
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:20260418T120655
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
END:VEVENT
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