Last month Richard Ayre and friends completed the 10K Stockton River Rat Race in honour of Daniel Howell, who has cystinosis. In doing so they raised over £500, here’s a few words from Richard: “I…
Cystinosis Foundation UK would like to thank everyone that helped make Layla’s charity fun day a great success. The event took place in Surrey on 10th August and raised over £1,000. The organisers worked extremely…
A group of adventurous fundraisers have recently completed a “Tough Mudder” challenge to raise money in honour of Madison, who has cystinosis. The event saw them taking on various obstacles and getting very muddy in…
Those of you who attended the conference in Manchester might have seen the Trustees sporting these fetching charity wristbands and wondered – where can I get hold of these? We are pleased to announce that…
A big fundraising fun day event is taking place in aid of Layla, a brave 3 year old girl who has cystinosis, with all proceeds benefiting Cystinosis Foundation UK. The event is taking place on…
Sunderland University has given us an update on their research into the use of prodrugs as a treatment for cystinosis: Summary of Cystinosis Research at the University of Sunderland – Winter/Spring 2014 Research at the…
To all cystinosis patients… There are a few registry databases that from time to time you are asked to populate your details into, these are of course important. One that will become more important in…
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 – http://www.agoralive.com/CystinosisFoundation/Event1/ We look forward to…
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.…
On Saturday 4 December, Marion Hutchison (Gran of Morven, age 4, who has cystinosis) and her friend Dorothy ran a pop-up shop in Selkirk in the Scottish Borders, selling handmade items and other bits and…