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… 

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… 

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.… 

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… 

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… 

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… 

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… 

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…