XLH UK

XLH UK is a prominent UK-based patient advocacy organization and registered charity dedicated to supporting individuals and families affected by X-linked hypophosphatemia (XLH) and related phosphate-wasting disorders. The organization plays a critical role in the healthcare landscape by providing patient support, raising disease awareness, and advocating for access to innovative treatments within the National Health Service (NHS). Notably, XLH UK was instrumental in the successful advocacy for the approval of burosumab (Crysvita), the first therapy to target the underlying cause of XLH, for both pediatric and adult populations in the UK. Beyond advocacy, the charity supports clinical research through collaborations with academic institutions, including the University of Oxford's RUDY study, to improve long-term outcomes and standards of care for the XLH community. The organization also serves as a founding member of the International XLH Alliance, amplifying the patient voice on a global scale.