Patients and families living in England with the ultra-rare condition cystinosis will have access to a life-changing treatment, following a recent funding decision by NHS England. The treatment – delayed-release mercaptamine bitartrate (brand name Procysbi)…
A small time commitment. A big difference for families living with a rare disease. Cystinosis Foundation UK is looking for a dedicated Volunteer Treasurer to join our friendly trustee board and help strengthen the financial…
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…
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 –…
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…
We are hugely grateful to Kidney Research UK for featuring cystinosis in their recent report ‘Collectively common: the devastating impact of rare kidney diseases in the UK’, calling for investment, innovation and quality care into…
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…
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…
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.
Our joint International Conference with CNE, held in Manchester in July 2024, was packed full of brilliant presentations by a range of contributors. We are delighted to be able to share with you a range…