Apr 24, 2021
Hi all, there have been lots of developments in the last 4 months that I am keen to share with you. Firstly, earlier in the year we joined NICE’s Scientific Advice committee to offer insights and advice on experiences and challenges that adults with XLH are faced...
Feb 28, 2021
Prof Stuart Ralston and his team have asked if XLH UK members would be interested in joining his disease awareness session on XLH this TUESDAY. Stuart will be joined by patient Ryan Frew on his experiences with XLH. It’ll be a great talk if you can make it and a...
Jan 15, 2021
NICE is currently deciding on who can get access to new treatments like burosumab in England and Wales. To do this, NICE needs more evidence for how XLH affects patients’ lives today. Because it is a rare disease, there is a big gap in our understanding. One way...
Nov 30, 2020
Trustee Sally Hatton on this brilliantly written article on how her challenges with XLH an often with other #rarediseases are sometimes not immediately obvious. The #IAmNumber17 campaign has been critical in providing a platform for the #patientvoice allowing those...
Oct 23, 2020
This webinar was organised to draw attention to the urgent challenges facing adults with XLH by sharing views from patient organisations, clinicians and researchers. We hope to provide information on the unmet needs of adults with XLH, and to give evidence on current...
