Latest News

Making the Move to Procysbi: One Family’s Experience

Making the Move to Procysbi: One Family’s Experience

Posted on October 6, 2026 by Alex Hutchison

Changing medications can feel like a big step, especially when you’ve followed the same routin…

Newsletter – Summer 2026

Newsletter – Summer 2026

Posted on July 28, 2026 by Alex Hutchison

Hello everyone and welcome to our 2026 Summer Newsletter. I hope everyone has managed to keep well h…

Patients and families affected by cystinosis in England to gain access to life-changing treatment, Procysbi

Patients and families affected by cystinosis in England to gain access to life-changing treatment, Procysbi

Posted on July 24, 2026 by Alex Hutchison

Patients and families living in England with the ultra-rare condition cystinosis will have access to…

Newsletter – Spring 2026

Newsletter – Spring 2026

Posted on March 29, 2026 by Alex Hutchison

Hello everyone and welcome to our 2026 Spring Newsletter Given the recent weird weather changes perh…

Bradley Pearson

Bradley Pearson

Posted on March 19, 2026 by Alex Hutchison

Joined: March 2026 I am a Project Engineering Manager, working in the water sector based in Manchest…

Kevin Burgess

Kevin Burgess

Posted on March 19, 2026 by Alex Hutchison

Joined March 2026 I am a dedicated medic and passionate advocate for the cystinosis community. Throu…

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