We recently became aware that many patients have been unable to get any supply of the unlicensed 0.55% cysteamine hydrochloride eye drops they are prescribed. We contacted Guy’s and St Thomas’ NHS Foundation Trust, who… 

We are saddened to hear that Dr. Jerry Schneider sadly passed away on 28th December 2021. Dr. Schneider devoted his entire career to cystinosis. He and his colleagues researched the condition when very little was… 

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… 

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… 

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,… 

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,… 

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 https://www.easyfundraising.org.uk/causes/cystinosis-foundation-uk and click… 

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… 

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…