A new research paper has been published as a result of the work undertaken at the University of Sunderland to develop a prodrug for the treatment of cystinosis. Cystinosis Foundation UK has been able to support the prodrug project thanks to generous donations and fundraising efforts by our supporters. The paper explains that “successful uptake […]

Huge congratulations to Anne McQuitty, of West Linton in Scotland, who has completed her 60 for 60 running challenge. Anne , already a keen runner, decided that she was going to set herself the challenge in her 60th year of doing 60 separate 10k runs, each in under an hour.  Anne completed her challenge in November, […]

Nikki Wood is once again selling hand made Christmas cards on eBay, with all proceeds being donated to us. They are being sold by auction so bid now before it’s too late! [auction-nudge tool=”listings”]   Selling on eBay can be a great way to raise money for us. You don’t have to donate 100% of […]

Ami Froehlich organised a ‘tuck shop’ at her work, selling snacks and lunch time treats to colleagues from mental health and learning disability services based at Ormskirk hospital. Since starting the shop in April 2015 it has raised over £300 for Cystinosis Foundation UK. The shop has proved to be more popular than initially expected, […]

Scott Hutchison, who is a member of Scottish indie rock band, Frightened Rabbit, has auctioned his Fender Jaguar ’65 American Vintage guitar on eBay, raising over £1,300 for Cystinosis Foundation UK. Scott and the rest of the band are always very keen to support the charity, given that his niece, Morven (daughter of trustee, Neil […]

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 […]

We have just released a new improved fundraising guide. It’s packed full of information to help you plan your next fundraising event. Download Fundraising Guide   We hope you find it useful, please contact us if you would prefer a printed copy, or if you need any further advice.

The Cystinosis Foundation UK has a small dedicated team of trustees that run its operation, these trustees are all volunteers and carry out their duties in their own time. To keep the charity moving forward in the future we need to bring in more people to help with running the operations. As a charity we […]

Cystinosis Research Network is looking for art contributions from cystinosis patients, to be part of a travelling art exhibition. This includes all types of creative work such as photography, poetry, music, painting and sculpture. You do not need to be a professional artist to submit a piece of art, the deadline is 1st February 2015. […]

We need your feedback! A new model of care for cystinosis has been proposed as part of the national designation application to NHS England. Your feedback is vital, the model of care needs to suit the needs of cystinosis patients. We have created an online survey you can fill in to give your opinion – […]

Wendy Walks Again for Cystinosis Last year Wendy Exelby, whose son Adam has cystinosis, raised £400 for us by doing a sponsored [...] Read more...
POSTPONED: National Cystinosis Study Day at QE Hospital, Birmingham UPDATE: Unfortunately this event has been postponed until Spring 2018. When a new date is [...] 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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