We are thrilled to announce the launch of the Generation Study, which will test newborns for changes in genes linked to over 200 rare genetic conditions. The research is run by Genomics England who partner with the NHS to provide whole genome sequencing diagnostics. This study will includes XLH and other rare hypophosphataemic conditions, recognising their seriousness and the availability of effective early childhood treatments within the NHS.

By screening for these conditions at birth, the Generation Study aims to accelerate diagnosis and intervention, significantly improving health outcomes for affected children. This initiative highlights the importance of early treatment in enhancing the quality of life for patients and their families.

At XLH UK, we are committed to keeping our community informed about this groundbreaking research. We will monitor the study closely and share progress updates as they become available. This is a pivotal moment for our community, and we look forward to the potential benefits this study may bring. 

To find out more about the study you can click here.