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 you can help with this is by joining the RUDY study and completing the questionnaires as well as the forms on fractures and surgeries (including bones, joints and parathyroid glands) you have had. We also need to know all the medications you are currently on including if and when any of you have started burosumab.
For more information please visit rudystudy.org or email us on firstname.lastname@example.org