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 […]

On 24th September 2011, over 100 people attended the UK Cystinosis conference at the Manchester Conference Centre– the first UK conference for several years and certainly the largest. Attendees included individuals from the Foundation itself, researchers, medical practitioners, those with Cystinosis, their families, friends and many others. We were also very pleased to welcome our […]

The Cystinosis Foundation UK conference programme is now available. The conference takes place on September 24th at the Manchester Conference Centre and is due to start at 10.00 and expected to last until 17.00. View the programme. Details On The Manchester Conference Centre Please note that there are a few spaces left. So please CONTACT […]

A huge number of you have registered your interest in the UK conference and there have been several requests to confirm whether the conference is taking place – the answer is simply “yes” and we look forward to seeing you there! Registrations are now formally closed, but we may be able to accommodate a few […]

The Cystinosis Research Network conference will take place between 14-16th July 2011 in San Francisco. The 3 day event will include sessions with researchers and medical professionals from the field of Cystinosis, as well as a poster presentation and a motivational lecture by Cindy Abbott who last year summited Mount Everest, despite being diagnosed with […]

Jonathan Terry Has Sadly Passed Away We are very sad to report that our founder, Jonathan Terry, died peacefully in his sleep on 9th [...] Read more...
10th March 2019 – Movie Music Magic Concert On 10th March 2019 the Cinematic Syncopations Orchestra are hosting an afternoon of music from [...] 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...
Newsletter – November 2012 Issue 21 of the Foundation newsletter has recently been finalised and is available to download [...] Read more...
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