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 […]

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. […]

The family of Ava, who was diagnosed with cystinosis last December, have organised a sponsored walk to raise money for Cystinosis Foundation UK. The walk takes place on Sunday, 26th August 2018. At the time of writing (23rd August) they have raised an incredible £4,440. For more information, or to make a donation, please visit […]

CFUK supporter Mark Hewitt got in touch with us recently, to let us know about his latest fundraiser: “I am raising funds for the Cystinosis Foundation UK, by walking the Yorkshire 3 Peaks Challenge on September 1st 2018. This will be the third fundraising event that I have arranged, following on from the successful Sheffield […]

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 […]

On 14th-15th June 2018, Orphan Europe will be hosting the 3rd Ophthalmology Cystinosis Forum. This event will take place at the Radisson Blu Edwardian Kenilworth Hotel, 97 Great Russell St, Fitzrovia, London WC1B 3LB. The full OCF day on Friday 15th June will gather approx. 50 key experts from several countries, committed to the management […]

We’d like to say a big thanks to Michelle Hull, Tashaa Preece, Paula Kimberley and all the ‘Penkridge Runners’ who completed the 2018 Stafford Half Marathon. They raised over £700 for us on their JustGiving page.

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