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…
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…
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…
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…
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…
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…
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…
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…
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…
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.