Hello everyone and welcome to 2026 and our winter newsletter. They say never start with an apology, but here goes. Although we aim to get this newsletter out quarterly, due to unfortunate circumstances, this edition has slipped. The… Newsletter – Winter 2025/26
A small time commitment. A big difference for families living with a rare disease. Cystinosis Foundation UK is looking for a dedicated Volunteer Treasurer to join our friendly trustee board and help strengthen the financial… Cystinosis Foundation UK Seeks Volunteer Treasurer
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… Scottish Medicines Consortium Approves Procysbi for NHSScotland Use, Offering New Hope and Choice for Cystinosis Patients
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 –… From Patient to PhD: Cystinosis Advocate Begins Doctoral Journey and Reunites with CFUK-Donated Lab Equipment
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… Cystinosis Foundation UK Celebrates Major Milestone: £3.9 Million Award to Advance Ground Breaking Treatment into Clinical Trials
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,… Eloise’s story is a candid portrait of childhood with cystinosis—showing how family, honesty, and routine can empower a young girl to thrive.
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… Cystinosis features in Rare Kidney Disease report
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.