Friday 15th March, 2024

Great news for tyrosinaemia type one!

On the 2nd of February 2023, we shared that the UK National Screening Committee (UK NSC) had recomended newborn screening for Tyrosinaemia Type One (HT1) following the urgent review of evidence that this condition should be added to the UK’s national newborn screening programme, including feedback from Metabolic Support UK. Since then, we’ve been working as part of the working groups tasked with ensuring this condition is added to the national panel.

On the 11th of March, 2024, Andrew Stephenson (Minister for Health and Secondary Care) informed the House of Commons that he has accepted the UK NSC’s recommendation to introduce a new condition Tyrosinemia type 1 to the Newborn Bloodspot Screening Programme in England.

This is an incredible achievement with the potential to lead to:

  • A reduction in the number of babies with tyrosinaemia type 1 who experience severe liver disease in the early months of life.
  • A reduction the number of babies with tyrosinaemia type 1 who need a liver transplant in later life.

We will continue to work as part of the groups tasked with the rollout of HT1 as part of the newborn screening panel and will continue to keep you updated on when we can hope to see this added to the panel!

Interested in learning more?

Below we’ve linked the minister’s statement as well as an article written by Mike Harris (Head of UK NSC transparency and public understanding) which gives further details into the reccomendation to screen for tyrosinaemia type one.

Click the buttons to navigate to these pages!

Read the statement from Andrew Stephenson (Minister for Health and Secondary Care)
Read the statement from Andrew Stephenson (Minister for Health and Secondary Care)
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