Cristina Eller-Vainicher and Giovanna Mantovani at member institution Fondazione Cà Granda IRCCS Ospedale Maggiore Policlinico, Milan, Italy are currently conducting an international survey to investigate current practices, access disparaties, and regulatory differences regarding Burosumab treatment in X-linked hypophosphatemia (XLH) with particular focus on:

• Challenges in the transition phase from paediatric to adult care
• Access and treatment continuity for patients over the age of 65

This initiative is especially relevant as, in Italy, adult access to Burosumab is limited: after the age of 18, treatment is reimbursed in the presence of an active fracture or pseudofracture only, and, after the age of 65, its use is off-label. These restrictions lead to significant care inequities. Sharing international experiences is essential to advocate for fair, non-discriminatory access across Europe and to improve patients’ quality of life.

TPlease support this initiative with you contribution by completing a short, structured questionnaire (approx. 10 minutes). Your input will help identify clinical gaps and support
international advocacy for more equitable access to care. Data will be anonymized and used solely for scientific purposes.
Please access the survey at the following link:
https://forms.gle/9SB7Sc18j9jdqwDD8