Hello everyone and welcome to our autumn newsletter. We have some fantastic stories from fundraisers over the summer and our CFUK T shirts have certainly covered some miles. All we can say is ‘Wow’ and thank… Newsletter – Autumn 2025
Morven, a teenager from Scotland, living with cystinosis, tells more about life with the condition in this feature written by Kidney Research UK. Morven and mum, Alex, share the emotional and physical toll of managing… The relentless reality of living with cystinosis – A teenager having to deal with a daily 2am wake-up routine
In this moving video feature from Metabolic Support UK, Millie and her parents share their journey of living with cystinosis. Despite the challenges of managing a complex treatment regimen and the looming threat of kidney… Millie’s story is a powerful testament to perseverance and hope.
Contributing to the Cambridge School of Clinical Medicine’s Patient Voice programme Our chair, Will, was delighted to receive an invitation to talk to Year 4 Medical Students at Cambridge School of Clinical Medicine in November… Talking the Talk
Diagnosed with nephropathic cystinosis at just seven months old, Lena spent years navigating a complex regimen of medications, blood tests, and hospital visits. Her curiosity about what happened to her blood samples led her to… Lena’s journey from patient to biomedical scientist offers a rare and inspiring glimpse into life with cystinosis