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…
Please join us on Saturday, 27th November at 2pm for our ‘Latest News and Updates’ webinar. We have 3 hours of presentations from 6 speakers, updating you on all the latest treatment and research news,…
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…
Please join us for our next online meet-up. Your chance to virtually meet other patients and families. Grab a drink and have a chat! The event will take place via Zoom on 25th September at…
We are very excited to launch our new mailing list! By signing up for free at the link below you will receive our email newsletter to keep you up to date with the latest news,…
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,…
SAVE THE DATE! The next Cystinosis Network Europe International Cystinosis Conference will take place in Belgium, 7th – 10th July next year. For more information please visit https://cystinosis-europe.eu/. Download Event Flyer PDF (575KB)
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,…
Please join us for our next online meet-up. Your chance to virtually meet other patients and families. Grab a drink and have a chat! The event will take place via Zoom on 25th April at…
Please join us for our next online meet-up. Your chance to virtually meet other patients and families. Grab a drink and have a chat! The event will take place via Zoom on 23rd January at…