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A curling stone and two sweepers

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 NHSScotland, following a third resubmission assessed under the orphan equivalent medicine process. This landmark decision marks a pivotal moment for individuals living… Scottish Medicines Consortium Approves Procysbi for NHSScotland Use, Offering New Hope and Choice for Cystinosis Patients

Lena in the lab at RGU

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 cystinosis patient, Lena Forsyth, began her PhD in Trauma-Induced Coagulopathy at the School of Pharmacy Applied Sciences and Public Health –… From Patient to PhD: Cystinosis Advocate Begins Doctoral Journey and Reunites with CFUK-Donated Lab Equipment

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 cystinosis: researchers at the University of Sunderland have received £3.9 million from the Medical Research Council (MRC) to take a… Cystinosis Foundation UK Celebrates Major Milestone: £3.9 Million Award to Advance Ground Breaking Treatment into Clinical Trials

Talking the Talk

Contributing to the Cambridge School of Clinical Medicine’s Patient Voice programme Our chair, Will, was delighted to receive an invitation to talk to Year 4 Medical Students at Cambridge School of Clinical Medicine in November… Talking the Talk

Student Voice Prize 2024

Our chair, Will Newman, once again had the opportunity to get involved with the annual Student Voice Prize – an annual, international essay competition that raises the profile of rare diseases within the medical field, particularly with medical… Student Voice Prize 2024

CNE International Conference 2024 – We did it!

Cystinosis Network Europe and Cystinosis Foundation UK were delighted to host the 2024 International Conference in Manchester, UK in July 2024! 

This family conference was attended by delegates from across the globe, bringing together patients, families, clinicians, researchers, practitioners and pharmaceutical representatives. A diverse range of activities were curated into a packed three day programme, including; a scientific meeting, a range of presentations from world leading experts, live translation into seven languages, a complimentary creche facility, outings for children and young people, an adult patient get together and all topped off with a fun filled hoolie, featuring Morris dancing by known other than our charity Chair, Will Newman!

All of our record-able speaker sessions are now available to view and share. Please see our separate News post to see the list of recordings and related links.

We have had such warm and positive feedback about the whole event from a variety of people that attended. It means the world to us that people truly did feel ‘better together’ by coming along.

Cystagon / Procysbi Survey

Do you have experience of cystagon (mercaptamine), procysbi (cysteamine bitartrate), or both? Take part in our questionnaire to help decision-makers understand the impact cystinosis and its treatment has on the day-to-day quality of life of… Cystagon / Procysbi Survey