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An Update From Our New Chairman

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… 

Newsletter 2009 Issue 16

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… 

Fundraising Update

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… 

Support The Adult Cohort Study

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… 

Teaching A Child With Cystinosis

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… 

The Importance of Accurate Cystine Level Testing

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… 

Proof of Concept Success for the Targeted Prodrugs

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… 

Cystinosis Family Support Network

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…