Latest News
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Scottish Medicines Consortium Approves Procysbi for NHSScotland Use, Offering New Hope and Choice for Cystinosis Patients
The Scottish Medicines Consortium (SMC) has today accepted mercaptamine (Procysbi) for use within NH…
News
From Patient to PhD: Cystinosis Advocate Begins Doctoral Journey and Reunites with CFUK-Donated Lab Equipment
A remarkable full-circle moment unfolded this autumn at Robert Gordon University (RGU), as adult cys…
News
Cystinosis Foundation UK Celebrates Major Milestone: £3.9 Million Award to Advance Ground Breaking Treatment into Clinical Trials
Cystinosis Foundation UK is proud to announce a momentous step forward in the fight against cystinos…
Personal Stories
Eloise’s story is a candid portrait of childhood with cystinosis—showing how family, honesty, and routine can empower a young girl to thrive.
Diagnosed at 18 months, Eloise lives with cystinosis. Her parents, Jenni and Tom, share the emotiona…
News
Cystinosis features in Rare Kidney Disease report
We are hugely grateful to Kidney Research UK for featuring cystinosis in their recent report ‘…
Newsletters
Newsletter – Autumn 2025
Hello everyone and welcome to our autumn newsletter. We have some fantastic stories from fundra…