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...
May 21, 2020
>> Link to view paper online << Delighted to be sharing a new publication that XLH UK and XLH Network was involved in. A lot of you here were instrumental in participating in the study and I’d like to thank you all for your input ! The study...
Jun 24, 2019
[vc_row][vc_column][cs_headings style=”simple” text=”To celebrate the first ever XLH awareness day on June 23rd, the International XLH Alliance, met in Salzburg, Austria to create an action plan which ensures that all patients with the disease and...
Jan 15, 2019
Did you know that RUDY Study data was included in the recent NICE evaluation in understanding XLH in children? We would like to highlight how important projects like RUDY is and the role it plays when researchers work with the data to better understand disease impact....
Dec 21, 2018
Today we have launched the Rare Musculoskeletal Diseases in Adulthood Priority Setting Partnership (PSP). I’m very happy to share the outcomes from the James Lind Alliance Rare Musculoskeletal Diseases PSP. Many of you gave your time to submit questions and to...
