Our thanks go to Professor Roz Anderson, at Sunderland University, for providing us with a recent update on her team’s research into prodrugs that are hoped to deliver improved treatments for cystinosis. This is a…
The 7th International Cystinosis Conference will be held at the Marriott Charles de Gaulle, Paris, France between June 28 – July 1, 2012. For more information please see the Cystinosis Foundation USA website. Hope to…
The Foundation is trialing a "Once A Month Chat Line" to allow those affected by cystinosis to have a discussion with Jonathan Terry (charity founder and oldest known person in the UK with cystinosis). These…
We are now on Twitter! The Cystinosis Foundation are now on Twitter, and you can follow all our latest new and events at https://twitter.com/cystinosisuk. See you there!
If you go down to Paddock Wood on the 25th March, you’re sure of a big surprise… Because among the runners at Kent’s largest half-marathon this year will be a team of 30 (yes, thirty!)…
Five-year-old Harley Ingham, who has cystinosis, is set to enjoy a trip with his family to Lego Land, thanks to Sheffield charity Help A Child Have A Chance and Sheffield newspaper The Star’s "12 Days…
On 12th May 2012, the Impy Inc Fishing Competition will be held at Greenacres Farm Fishery in Biddenden in Kent. The competition is open to all at a cost of £15 per entry (£10 non-refundable…
Orphan Europe were one of our sponsors at the Cystinosis UK conference held in Manchester in September this year for whom we were very grateful . This article explains who they are and what their…
28-year-old Alison Kirk, from Wallasey, Wirral, has cystinosis and has been on kidney dialysis since she was 11. However, despite the odds, Alison gave birth to Gracie Mae on 21st November 2011, becoming one of…
Issue 20 (November 2011) of our newsletter has recently been published and if you are a member of the Foundation you should receive your copy soon, or you can download it directly from the website…