Blog
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. If you’ve not already done so, I’ll ask that you to sign up to RUDY, and if you already have, that you are logging back in to keep on top of your surveys. This is going to be key when NICE evaluate future treatments for adult care.
This is the now the time to focus on the possibilities of new treatment for adults. You’ll all remember how important the ‘burden of illness’ studies can be because the healthcare assessors and decision makers across Europe need to understand what the quality of life is currently like for adults and their families living with XLH.