Jessica Jondle, 30, a teacher from California, USA, has written a book about her experiences of living with cystinosis. Diagnosed with cystinosis in 1983, when doctors gave her 10 years to live, ‘Roller skating with…
Facing the prospect of a major organ transplant is a big enough ordeal in itself. Knowing that the organ was donated from a person who died creates a whole new host of challenges to overcome.…
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…