As you’re probably aware, there is a new medication with the same active ingredient as Cystagon, cysteamine, but in a slow-release formulation – meaning a less frequent dosing schedule and potentially fewer side effects. That drug is called Procysbi, it’s available to patients in other countries, including the US and parts of Europe. Unfortunately, this […]

We are extremely pleased to announce that, for the first time, we have collaborated with Cystinosis Ireland to jointly fund 2 new important research projects to a total value of €250,000. The first research project is entitled “Analysis and exploration of novel treatment approaches for muscular disease in cystinosis”, which will be led by Principal […]

This Sunday, 5th September a team of 5 fundraisers is taking on the ‘Tough Mudder‘, which is described as ‘a series of obstacle and mud runs that will push your physical and mental limits’. And, as the name suggests, it is known to be a very muddy challenge. Their JustGiving page was set up by […]

Following advice from the Clinical Priorities Advisory Group (CPAG), NHS England has agreed to routinely commission mercaptamine hydrochloride viscous eyedrops (Cystadrops) for corneal cystine deposits, in people aged 2 years and over. In other words, doctors treating patients with cystinosis in England will soon be able to prescribe the new formulation of eye drops, called […]

On Saturday 10th Oct 2020 Cystinosis Foundation UK ran their first online Cystinosis Symposium, co-hosted by Metabolic Support UK as part of their 2020 Virtual Annual Conference. In a packed 2 hour session we heard from 4 contrasting speakers before opening up into a Q & A session, expertly moderated by Pushpa Hossein from MSUK. […]

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 […]

QUALIFY-US Study Participants are needed for the testing of a newly developed questionnaire to measure the [...] Read more...
CNE International Conference 2024 Cystinosis Network Europe and Cystinosis Foundation UK are delighted to announce the 2024 [...] 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...
Summer 2023 Newsletter The Summer 2023 edition of our email newsletter is available to view at the link below. CFUK [...] Read more...
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