Newsletter – Summer 2026
Hello everyone and welcome to our 2026 Summer Newsletter. I hope everyone has managed to keep well hydrated (maybe not as much as the World Cup Football teams) in this unusually warm summer. A few…
Patients and families affected by cystinosis in England to gain access to life-changing treatment, Procysbi
Patients and families living in England with the ultra-rare condition cystinosis will have access to a life-changing treatment, following a recent funding decision by NHS England. The treatment – delayed-release mercaptamine bitartrate (brand name Procysbi)…
Newsletter – Spring 2026
Hello everyone and welcome to our 2026 Spring Newsletter Given the recent weird weather changes perhaps this should be renamed the ‘all-seasons’ newsletter! Despite the setbacks with trying to make Procysbi available in the whole…
Bradley Pearson
Joined: March 2026 I am a Project Engineering Manager, working in the water sector based in Manchester. My son was diagnosed with Cystinosis in 2022 at 18 months. Since diagnosis, the foundation has been a…
Kevin Burgess
Joined March 2026 I am a dedicated medic and passionate advocate for the cystinosis community. Through my involvement with the Alder Hey Kidney Fund, I work to support children and families facing kidney disease. As…
Newsletter – Winter 2025/26
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…
Cystinosis Foundation UK Seeks Volunteer Treasurer
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…
Scottish Medicines Consortium Approves Procysbi for NHSScotland Use, Offering New Hope and Choice for Cystinosis Patients
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…
From Patient to PhD: Cystinosis Advocate Begins Doctoral Journey and Reunites with CFUK-Donated Lab Equipment
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 Celebrates Major Milestone: £3.9 Million Award to Advance Ground Breaking Treatment into Clinical Trials
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…