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 […]

We are looking for people in the UK to take part in a research study that aims to better understand the eye problems that people with cystinosis experience and how these eye problems are treated using eye drops. If you have cystinosis or you have a child who has cystinosis you are eligible to participate. […]

Some of you have asked us recently if we know when the new slow-release cysteamine medication (Procysbi), will be available on the NHS. What we can tell you is that we are talking with the pharmaceutical company that produces Procysbi, Horizon Pharma, and are hopeful that their negotiations with the NHS come to a conclusion […]

We would like to congratulate Professor Roz Anderson, Professor of Pharmaceutical Chemistry at the University of Sunderland, who has been recognised with a ‘Women in STEM WIN award’ last month. The award recognises Roz’s commitment to the development of medicinal chemistry throughout her career, in particular her work to develop improved treatments for cystinosis. Many […]

We (Neil Hutchison and Roy Forsyth) have just been at Sunderland University for a meeting with the research team there. This was to hear about the updates to the Prodrug research we are currently funding and have been as a long term project. So where are we now? We have a candidate drug (code-named CF-10) […]

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 […]

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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