News

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 […]

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 […]

Cystadrops® Now Available on Prescription Orphan Europe’s Cystadrops® are now available on prescription in the UK. They are [...] Read more...
POSTPONED: National Cystinosis Study Day at QE Hospital, Birmingham UPDATE: Unfortunately this event has been postponed until Spring 2018. When a new date is [...] 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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