Become a Trustee
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…
Artwork Needed for Art Exhibition
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…
National Designation Survey – Your Chance to Have a Say
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…
Have You Had a Flu Vaccine?
It’s that time of year again, flu season! The NHS recommends that people with long term health conditions, including cystinosis, have a flu vacinne. Patients who have had a transplant are at increased risk of…
Old Car? Scrap It for Cystinosis
We have recently joined a website called Giveacar, which collects old cars, scraps or auctions them, then donates the proceeds to charity. Do you own a vehicle that you want to sell or get rid…
River Rat Racers Brave Gruelling Obstacle Course for Cystinosis
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…
Layla’s Fun Day – A Big Success!
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…
Maddy’s Mad Mudders Get Muddy for Cystinosis
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…
Charity Wristbands for Sale
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…
Charity Fun Day for Layla
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…