There have been some changes behind the scenes at the Cystinosis Foundation UK that I would like to announce, which have been brought about by the retirement of our former treasurer, Paul Doyle. Paul was… An Update From Our New Chairman
Issue 16 (January 2009) of our newsletter has recently been released and all members should now have their copy. And a bumper edition it is too, with stories on research, medical notes and experiences of… Newsletter 2009 Issue 16
16th February 2009 Lauren Ellis, Manchester My name is Lauren and I was diagnosed with Cystinosis when I was 18 months old. I was always a very sickly baby but when my mum took me… I Have Cystinosis, Cystinosis Does Not Have Me!
Several years ago, the Cystinosis Foundation UK set out to raise £100,000 to support research that would help improve treatments for Cystinosis. It was a lofty challenge for such a small organisation, but by December… Fundraising Update
Dr William van’t Hoff, Great Ormond Street Hospital, London The Cystinosis Foundation UK are very pleased to be involved with a new study aimed at furthering our understanding of the effects of Cystinosis in adult… Support The Adult Cohort Study
Mrs Dale, Ridgeway School, Derby (www.ridgewayprimary.com) When I was first told that I was going to have a child with Cystinosis in my class, I have to admit I was clueless. It was a condition… Teaching A Child With Cystinosis
Dr Neil Dalton of The Evelina Childrens Hospital, London. “The importance of white cell cystine measurements in the diagnosis and clinical management of patients with cystinosis cannot be over emphasised. The measurement is particularly valuable… The Importance of Accurate Cystine Level Testing
Professors Roz Anderson and Paul Groundwater, with Pratap Suryadevara and Stephanie Cannell, University of Sunderland, UK, in collaboration with Professor William van’t Hoff, Great Ormond Street Hospital, London, UK. Summary By John Terry. The prodrug… Proof of Concept Success for the Targeted Prodrugs
Some of you may have noticed that the website www.cfsn.co.uk is no longer available. We are sad to report that the Cystinosis Family Support Network has indeed ceased to exist. The Cystinosis Family Support Network… Cystinosis Family Support Network