SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Events

Cystinosis Network Europe and Cystinosis Foundation UK are delighted to announce the 2024 International Conference is open for registrations!  You can find out more on our dedicated webpage and register your place on our booking form.   We are looking forward to an exciting and interesting family conference, beginning with a welcome session on the evening of 25th […]

Join us (virtually) for a Cystinosis Connect online meeting at 7.30pm on Thursday 29th February – Rare Disease Day! We’re really keen to get as many people in our community together to get your input as to your expectations and preferences for our International Conference in Manchester in July this year. We’re working away in […]

We are looking forward with excitement to the CNE International Conference in Manchester that we are hosting on 26 and 27 July 2024. The conference will be based at a central Manchester hotel and we are delighted to announce that confirmed speakers include: • – Jordan Janz, adult with cystinosis and first participant in Dr Stephanie […]

The Cystinosis Network Europe (CNE) International Conference will be hosted by Cystinosis Foundation UK in Manchester, England, from 25th to 27th July 2024. The scientific meeting will be held on 25th July, with the family meeting on 26th and 27th July. Please save the date! We are delighted that Dr Graham Lipkin, consultant nephrologist at […]

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, including the ongoing CF10 prodrug study, as well as 2 new research projects that we are co-funding with Cystinosis Ireland. […]

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

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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