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…
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…
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…
Did you know? When you shop online you can raise money for Cystinosis Foundation UK, and it doesn’t cost you a penny! We are registered with easyfundraising. To get started go to https://www.easyfundraising.org.uk/causes/cystinosis-foundation-uk and click…
Metabolic Support UK are working with LDA Research Ltd on behalf of Silver Fern, an independent market research agency, to conduct some research on behalf of Chiesi, a pharmaceutical company. Would you be happy to…
CF10 (Cystinosis Foundation 10) is the code name for the prodrug developed by the late Professor Roz Anderson at Sunderland University with over £1m of funding from Cystinosis Foundation UK. Roz worked closely with cystinosis…
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…
Unfortunately, following advice from a recent meeting of the Clinical Priorities Advisory Group (CPAG), which makes recommendations to NHS England on which services, treatments and technologies should be prioritised for investment, NHS England have decided…
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…
We are very sad to report that our founder, Jonathan Terry, died peacefully in his sleep on 9th May 2019. Jonathan founded Cystinosis Foundation UK in 1998. For many years he was the charity’s central…