An online silent auction is being organised in honour of 18 month old Ellie Pond, who has cystinosis. Since Ellie’s diagnosis last year her family and friends have been keen to fundraise and raise awareness…
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…
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…
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…
When Will Newman’s granddaughter, Ellie, was diagnosed with cystinosis 5 months ago he wanted to help raise awareness of the condition. On 9th December he had ‘Ellie’ shaved into his head, a fantastic, albeit unusual…
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…
Cystinosis Foundation UK supporter, Wendy Exelby, who has a son with cystinosis, will be doing a 16.6. mile sponsored walk from her home in Old Goole through to Adlingfleet where she grew up. The walk…
Back in June this year a group of energetic fundraisers took part in the Gung-Ho! Seriously Fun 5K Inflatable Obstacle Course in Edinburgh. David Kells, Adam Neilson, Steve Gault & Rebecca Gault all took part…