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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…

Newsletters

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, …

News

Cystinosis Foundation UK Seeks Volunteer Treasurer

Posted on January 22, 2026 by Alex Hutchison

A small time commitment. A big difference for families living with a rare disease. Cystinosis Founda…

News

Scottish Medicines Consortium Approves Procysbi for NHSScotland Use, Offering New Hope and Choice for Cystinosis Patients

Posted on November 10, 2025 by Alex Hutchison

The Scottish Medicines Consortium (SMC) has today accepted mercaptamine (Procysbi) for use within NH…

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