Cystinosis Foundation UK is a charity that helps and supports people living with the rare orphan condition cystinosis. We are looking for new trustees to bring their professional skills and expertise to the organisation so that we can continue to improve the medical research and patient support activities we have been doing for nearly 20 […]

Dr. Florian Eichler, Associate Professor of Neurology at the Massachusetts General Hospital in Boston, US is conducting a multi-part research study, looking at distal myopathy (muscle wastage in the hands, arms, feet and legs) in nephropathic cystinosis. If you are an adult with cystinosis you can participate by completing a short survey, it takes no longer […]

Orphan Europe’s Cystadrops® are now available on prescription in the UK. They are described as ‘a unique viscous eye drops solution, indicated for the treatment of corneal cystine crystal deposits in adults & children from 2 years of age with Cystinosis’. The formulation of Cystadrops® allows four instillations per day which should considerably favour patient’s […]

The McGill  University Children’s Hospital in Montreal, Canada is still looking for participants who have cystinosis, to take part in a study they are undertaking to “better understand a special type of mutation (called a ‘nonsense mutation’) which tricks the cell into stopping production of the Cystinosin protein (the protein that is missing in cystinosis) […]

Last year Wendy Exelby, whose son Adam has cystinosis, raised £400 for us by doing a sponsored walk. This year Wendy is once again doing a sponsored walk. It will be a 10 mile walk which will take place on 12th August. If you’d like to sponsor Wendy, you can do so via her JustGiving […]

Back in April, Paul Stone ran the London Marathon, raising £1,258 for us. Paul chose to fundraise for us because his cousin’s son, Elliot, has cystinosis. We don’t officially get given any charity places for the London Marathon, but Paul was lucky enough to get a place in the public ballot. We’d like to say […]

Sadly on Friday 3rd March Steve Watts passed away after battling cancer for a long time. He was very close to his 9 year old nephew Harry Beardsell who was diagnosed with cystinosis at the age of 1. Instead of buying flowers family & friends that attended Steve’s funeral kindly donated money to Cystinosis Foundation […]

On 4th March 2017, 260 guests enjoyed a fabulous evening of entertainment at this year’s ‘Great Big Glitter Ball’. The event was held at Prestonfield House Hotel in Edinburgh, in aid of Cystinosis Foundation UK. A massive £62,000 was raised from the night, through a raffle, lucky dip, silent auction and a grand auction. Entertainment […]

We are pleased to be collaborating with Cystinosis Ireland and Cystinosis Research Network to provide funding for principle investigators around the world interested in studying cystinosis. Cystinosis Ireland’s 1st Seedcorn Funding Programme aims to ‘provide researchers with the opportunity to generate solid preliminary data which would contribute to a sustainable, longer-term application for funding either […]

Orphan Europe’s parent company, Recordati, have announced that the European Union Commission have granted the European marketing authorisation for its orphan medicinal product, Cystadrops®. This is the first eye-drop solution containing cysteamine hydrochloride approved in the European Union for “the treatment of corneal crystal deposits in adults and children from 2 years of age with […]

Team of Five to Take on Tough Mudder Challenge This Sunday, 5th September a team of 5 fundraisers is taking on the ‘Tough Mudder‘, [...] Read more...
‘Cystinosis Connect’ Virtual Meet-up – 25th September 2021 Please join us for our next online meet-up. Your chance to virtually meet other patients and [...] 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...
Please Subscribe to Our New Mailing List We are very excited to launch our new mailing list! By signing up for free at the link below [...] Read more...
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