National Kidney Federation

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: https://lnkd.in/e-Syi3eN 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 [email protected]. 

We have now come to a close on our speaker sessions, we would like to say a big thank you to all of our guest speakers for delivering their presentations today and to our attendees for joining our Annual Event. 👏 For those who couldn't attend, not to worry, all our sessions from today have been recorded and will be available to watch back soon. Keep your eyes peeled! 🧡 #NKFAnnualEvent2025

Now for our final speakers of the day, Dana Holmes and Alison Lawrence, both NKF Peer Supporters. Dana and Alison are discussing their role as peer supporters and the benefits of home dialysis and why kidney education and advocacy matters. #NKFAnnualEvent2025

Joining us now is Lisa Ancliffe, Clinical Lead Occupational Therapist at the Royal Free Hospital to talk about frailty and fatigue #NKFAnnualEvent2025

Kathryn Taylor, Social Worker at Bristol Royal Hospital for Children is ready to take the stage, to take a closer look at the psychosocial aspects of kidney care and multi-disciplinary working. #NKFAnnualEvent2025

We are excited to introduce our next guest speakers, Dr Lisa Willcocks and Benjamin Stokes with an interactive session to discuss the importance of regular blood and urine testing and monitoring chronic kidney disease, with a special focus on IgA Nephropathy. #NKFAnnualEvent2025

Oscar Walton, Kidney Dietitian is next up, providing a walkthrough of nutrition and kidney disease, with a focus on the beneficial dietary changes at different stages of the kidney journey. #NKFAnnualEvent2025

Alex Gibbs, patient speaker and fellow NKF Peer Supporter, now joins us on stage to share insights on the lows and highs of dialysis as a young adult. From transition, to complications, to starting university, and balancing treatment around student life. #NKFAnnualEvent2025

It's time for our next session with Andy and Stacey Jones. Stacey is a Secondary School Science Teacher, on the side of being a wife to Andy, mum to Dannielle (aged 17), and Rosalie (aged 15), she donated her kidney in November 2022 into the paired scheme in order for her husband, Andy, to receive a new lease of life. Together Andy and Stacey will discuss their experiences of becoming a live donor and transplant recipient. #NKFAnnualEvent2025