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