The Scottish Medicines Consortium (SMC) has today accepted mercaptamine (Procysbi) for use within NHSScotland, following a third resubmission assessed under the orphan equivalent medicine process. This landmark decision marks a pivotal moment for individuals living…
A remarkable full-circle moment unfolded this autumn at Robert Gordon University (RGU), as adult cystinosis patient, Lena Forsyth, began her PhD in Trauma-Induced Coagulopathy at the School of Pharmacy Applied Sciences and Public Health –…
Cystinosis Foundation UK is proud to announce a momentous step forward in the fight against cystinosis: researchers at the University of Sunderland have received £3.9 million from the Medical Research Council (MRC) to take a…
Diagnosed at 18 months, Eloise lives with cystinosis. Her parents, Jenni and Tom, share the emotional journey from diagnosis to daily management, including the challenges of foul-tasting medication, disrupted sleep, and the importance of early,…
We are hugely grateful to Kidney Research UK for featuring cystinosis in their recent report ‘Collectively common: the devastating impact of rare kidney diseases in the UK’, calling for investment, innovation and quality care into…
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…
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…
Hello everyone and welcome to our Summer newsletter. Quite a bit of change with our trustees. We’re sad to say goodbye to one of longest serving trustees, Neil Sugden, who has been with us since 2011…
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…
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…