We were delighted to welcome so many of you to the Family Day on Sunday 2nd October in Manchester, especially to people who braved all the rail disruption to get there! We hope you found it was a lovely day where helpful information was shared, new friendships were formed and the children’s facepainting was a great hit!
Many thanks to everyone who took time to complete one of our feedback forms on the day and for agreeing to share your thoughts. You’ll see from the quotes below – and from on our Facebook group (https://www.facebook.com/groups/xlhukcharity/) – that the comments were overwhelmingly positive! Please feel free to send us any more thoughts or ideas you’ve had so that we can make future events and communications as valuable as possible.
“I had never met anyone else with XLH before and comparing experiences and chatting with others who also have it has been amazing”
“Finding out available help, support”
“Meeting other families and sharing experiences”
“Finding out about the drug Burosumab and possible treatments available”
For those who came along and also for those who couldn’t make it to the Family Day, we’re attaching a pdf of the slides for you to read through. Please contact us at contact@xlhuk.org if you have any questions.
**Coming Soon** Keep checking our website for the Family Day photos. Also, please look out for our first XLH UK newsletter!
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Our presentation van be viewed here: https://xlhuk.org/wp-content/uploads/2022/10/Family-Day-2-Oct-22-Slides-.pdf