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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…

News

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…

Newsletters

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…

Trustees

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…

Trustees

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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Newsletter – Winter 2025/26

Posted on February 11, 2026 by Alex Hutchison

Hello everyone and welcome to 2026 and our winter newsletter. They say never start with an apology, …

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Latest News

Newsletter – Summer 2026

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

Newsletter – Spring 2026

Bradley Pearson

Kevin Burgess

Newsletter – Winter 2025/26

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