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. […]

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 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 […]

The 2018 European Cystinosis Conference is taking place in Berlin, Germany from July 13th to 15th. The main theme of the conference is “Growing Up with Cystinosis – The Opportunities and The Challenges”. At the conference, doctors and researchers will present their latest findings. Patients and families meet, exchange, learn as well as educate. The […]

Cystinosis Foundation (based in the USA) have announced that the next international cystinosis congress is to take place at the Barcelo Valencia Hotel in Valencia, Spain between the 30th June and 2nd July, 2016. Valencia is the third largest city in Spain and is situated on the east coast. The last of these events took […]

The registration website for the 8th International Cystinosis Conference (24th-26th July 2014) is now live. Visit this link to view the conference agenda and find out how to register – We look forward to seeing you there!

The 8th International Cystinosis conference is going ahead on the 24th to the 26th of July 2014 at the Renaissance Manchester City Centre Hotel. The conference programme and booking system will be online very soon. The full address of the hotel is: Renaissance Manchester City Centre Blackfriars Street Manchester M3 2EQ T: 0161 831 6011

We are delighted to announce that the 8th International Cystinosis Conference will be held in Manchester, UK in late July 2014. Further details of location and date will be issued soon. We are looking forward to hosting a great event and seeing as many of you as possible there.

Orphan Europe were one of our sponsors at the Cystinosis UK conference held in Manchester in September this year for whom we were very grateful . This article explains who they are and what their involvement is with the Cystinosis community. Serving the Unmet Clinical Needs of patients with Rare Disorders Many of our members […]

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