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…