15/10/2025
NHS to screen all newborn babies for life-threatening metabolic disorder
The NKF welcomes the announcement that newborn babies will now be routinely screened and treated earlier on the NHS for a life-threatening metabolic disorder, Hereditary Tyrosinaemia Type 1 (HT1), is a rare, genetically inherited, disorder that affects around seven babies per year in the UK.
HT1 affects the way in which the body breaks down protein in food. Protein is usually broken down into amino acids by enzymes. In people affected by HT1, there is a mutation to the gene that controls the enzyme which breaks down an amino acid called Tyrosine. When the body is unable to break down Tyrosine, a harmful chemical builds up in the blood and left untreated, the disorder can cause liver failure, kidney disease and can lead to liver cancer.
This condition will now be screened for in the blood test babies get on the fifth day after they are born, taken from the heel and the test will help to identify and treat babies before symptoms appear, meaning they can get life-saving daily drug treatment sooner and be placed on a restricted diet to make them less likely to face long term health problems in later life.
The NKF are calling for the government to focus on early detection and intervention of kidney disease and this is a step in the right direction to show that a preventive approach can support people to receive the treatment they need sooner and help them to live longer, healthier lives.
For more information, please visit NHS England: www.england.nhs.uk/2025/10/nhs-to-screen-all-newborn-babies-for-life-threatening-metabolic-disorder/
Would you like to have a confidential chat with one of NKF’s Helpline advisors? Our free to call Helpline is available Monday to Thursday 08:30am – 5pm and Friday 08:30am – 12:30pm on 0800 169 09 36 or email helpline@kidney.org.uk.
NHS England » NHS to screen all newborn babies for life-threatening metabolic disorder
