CF10 (Cystinosis Foundation 10) is the code name for the prodrug developed by the late Professor Roz Anderson at Sunderland University with over £1m of funding from Cystinosis Foundation UK. Roz worked closely with cystinosis…
Unfortunately, following advice from a recent meeting of the Clinical Priorities Advisory Group (CPAG), which makes recommendations to NHS England on which services, treatments and technologies should be prioritised for investment, NHS England have decided…
We are very sad to report that our founder, Jonathan Terry, died peacefully in his sleep on 9th May 2019. Jonathan founded Cystinosis Foundation UK in 1998. For many years he was the charity’s central…
A £1.6m grant will help continue the legacy of an “inspirational” Sunderland scientist dedicated to improving the treatment of patients with cystinosis. Professor Anderson, who sadly lost her battle with cancer last year, and her…
We are incredibly pleased to report that our founder, Jonathan Terry, has been awarded an MBE in the Queen’s 2019 New Year’s Honours List. The honour is given to people who have made an outstanding…
Cystinosis Foundation UK is a charity that helps and supports people living with the rare orphan condition cystinosis. We are looking for new trustees to bring their professional skills and expertise to the organisation so…
Dr. Florian Eichler, Associate Professor of Neurology at the Massachusetts General Hospital in Boston, US is conducting a multi-part research study, looking at distal myopathy (muscle wastage in the hands, arms, feet and legs) in nephropathic…
Orphan Europe’s Cystadrops® are now available on prescription in the UK. They are described as ‘a unique viscous eye drops solution, indicated for the treatment of corneal cystine crystal deposits in adults & children from…
The McGill University Children’s Hospital in Montreal, Canada is still looking for participants who have cystinosis, to take part in a study they are undertaking to “better understand a special type of mutation (called a…
Last year Wendy Exelby, whose son Adam has cystinosis, raised £400 for us by doing a sponsored walk. This year Wendy is once again doing a sponsored walk. It will be a 10 mile walk…