What information does the Welsh Government have about the prevalence of XLH (X-linked hypophosphataemia)?
Answered by Minister for Health and Social Services | Answered on 13/06/2022
The Welsh Government does not hold this information. However, information about this condition at a European level is available on the Orphanet Portal, which indicates a prevalence of about 1 in 20,000:
Orphanet: X linked hypophosphatemia
We have, together with the other governments in the UK, published a Rare Diseases Framework which will help people with rare conditions to access earlier diagnoses and treatments. There will be a Welsh plan to implement the framework in Wales.