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 organiser, dealing with hundreds of enquiries from patients and their families. He was the oldest patient in Europe and was […]

A £1.6m grant will help continue the legacy of an “inspirational” Sunderland scientist dedicated to improving the treatment of patients with cystinosis. Professor Anderson, who sadly lost her battle with cancer last year, and her team spent 15 years carrying out research to design novel prodrugs to take the effective treatment for cystinosis, cysteamine, directly […]

We are incredibly pleased to report that our founder, Jonathan Terry, has been awarded an MBE in the Queen’s 2019 New Year’s Honours List. The honour is given to people who have made an outstanding contribution to their communities. Jonathan founded Cystinosis Foundation UK in 1998. He is the oldest surviving cystinosis patient in Europe. […]

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 […]

Jonathan Terry Has Sadly Passed Away We are very sad to report that our founder, Jonathan Terry, died peacefully in his sleep on 9th [...] Read more...
10th March 2019 – Movie Music Magic Concert On 10th March 2019 the Cinematic Syncopations Orchestra are hosting an afternoon of music from [...] 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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