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… Newsletter – Spring 2026
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… Bradley Pearson
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… Kevin Burgess
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