Events

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 2:30pm. Please visit the link below to register for your free place: https://www.eventbrite.co.uk/e/cystinosis-connect-september-2021-tickets-172157446557

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)

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 2:30pm. Please visit the link below to register for free. https://www.eventbrite.co.uk/e/cystinosis-connect-april-2021-tickets-151098434485

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 2:30pm. Please visit the link below to register for free. https://www.eventbrite.co.uk/e/cystinosis-connect-january-2021-tickets-136295795393

Please join us for our first ever 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 7th November at 2:30pm. Please visit the link below to register for free. https://www.eventbrite.co.uk/e/cystinosis-connect-tickets-126580029275

As part of Metabolic Support UK’s 2 day virtual conference we are co-hosting a 2 hour interactive ‘Cystinosis Symposium’ breakout session on Saturday, 10th October 2020, 2-4pm. We’ll have the latest research updates, including the prodrug project that your donations have helped to fund. Plus, nephrologist Dr. David Game will be joining us, giving advice […]

Following the cancellation of the International Cystinosis Conference in July due to coronavirus, Cystinosis Ireland and Cystinosis Network Europe have announced their decision to hold a ‘Virtual International Cystinosis Conference’ online. This will take place on Saturday, 25th April, 1pm – 8pm CET (12pm – 7pm BST). We thoroughly recommend you virtually attend. You’ll be […]

UPDATE: This event has been cancelled, a virtual conference will take place instead, on 25th April (see https://www.cystinosis.org.uk/events/virtual-international-cystinosis-conference-25th-april-2020/). The 2020 Cystinosis Network Europe Conference takes place at the Royal Marine Hotel in Dublin, Ireland from July 10th to 12th. The event includes a lively and engaging agenda with doctors and researchers presenting research and best […]

On 10th March 2019 the Cinematic Syncopations Orchestra are hosting an afternoon of music from an array of movies, at the Blackheath Halls in South East London. Profits from the concert will be donated to Cystinosis Foundation UK, in memory of Andrew Storer who had cystinosis and sadly passed away in 2017. More Information: Experience […]

NEW VENUE: The event will now be held at The Priory Rooms in Birmingham City Centre. The QE Hospital in Birmingham are hosting a ‘National Cystinosis Study Day’ on Saturday, 26th January 2019, from 9:30am to 4:30pm. The day will include talks from various health professionals, plus the chance to meet other people who have cystinosis. […]

Team of Five to Take on Tough Mudder Challenge This Sunday, 5th September a team of 5 fundraisers is taking on the ‘Tough Mudder‘, [...] Read more...
‘Cystinosis Connect’ Virtual Meet-up – 25th September 2021 Please join us for our next online meet-up. Your chance to virtually meet other patients and [...] 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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