Changing medications can feel like a big step, especially when you’ve followed the same routine for years. For families affected by cystinosis, the move from Cystagon to Procysbi can bring excitement, questions, and sometimes a…
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 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)…
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…
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…
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…
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…
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…
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 –…