Did you know? When you shop online you can raise money for Cystinosis Foundation UK, and it doesn’t cost you a penny! We are registered with easyfundraising. To get started go to and click ‘Support this cause’ and follow the steps to create an account. When you want to shop online log in to […]

Metabolic Support UK are working with LDA Research Ltd on behalf of Silver Fern, an independent market research agency, to conduct some research on behalf of Chiesi, a pharmaceutical company. Would you be happy to help in this research by completing a short questionnaire? To take part, please click the following link: The questionnaire […]

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 patients and before her untimely death in 2018 was able to secure a £1.6m MRC grant to take the project […]

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 not to routinely commission Cystadrops at this time. CPAG assesses drugs, medical devices and treatments according to their clinical effectiveness, […]

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 organiser, dealing with hundreds of enquiries from patients and their families. He was the oldest patient in Europe and was […]

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 team spent 15 years carrying out research to design novel prodrugs to take the effective treatment for cystinosis, cysteamine, directly […]

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 contribution to their communities. Jonathan founded Cystinosis Foundation UK in 1998. He is the oldest surviving cystinosis patient in Europe. […]

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 that we can continue to improve the medical research and patient support activities we have been doing for nearly 20 […]

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 cystinosis. If you are an adult with cystinosis you can participate by completing a short survey, it takes no longer […]

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 2 years of age with Cystinosis’. The formulation of Cystadrops® allows four instillations per day which should considerably favour patient’s […]

Procysbi Available in Wales Following a decision by the ‘All Wales Therapeutics and Toxicology Centre’ Procysbi [...] Read more...
Latest News and Updates Webinar – 27th November 2021 Please join us on Saturday, 27th November at 2pm for our ‘Latest News and Updates’ [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Please Subscribe to Our New Mailing List We are very excited to launch our new mailing list! By signing up for free at the link below [...] Read more...
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