UK – 12 Rare Bone Disease Specialists: XLH Patient Pathway

Mapping a Rare Disease Pathway

Recruiting through established networks.

The client was preparing for a new adult indication in X-linked hypophosphatemia (XLH), a rare inherited condition. It needed to understand how adult patients move through the UK health system: who sees them first, who diagnoses them, and who manages them long term.

Adult XLH care in the UK is spread across several specialties, so…