The RUDY study has been looking at stiffness in adults with XLH — where it shows up in the body, and whether burosumab helps in everyday life. So far, we’ve learned that:

• People on burosumab often feel less stiff, especially in their shoulders and wrists (which surprised doctors, who thought stiffness in the arms and shoulders was quite uncommon in XLH)
• Four clear patterns of stiffness appear across the body
• Pain and stiffness don’t always match
• Hip stiffness is common for everyone

These early findings come from 39 adults who completed their RUDY questionnaires — 30 of whom had used burosumab.

Your voice matters. Each person who fills in their questionnaires adds another piece to the puzzle, helping researchers understand XLH more fully and improving the care and support available to the whole community. Even one more participant can make the data stronger, clearer, and more representative of real life.

Your lived experience is powerful — and when shared, it helps shape better care for everyone with XLH