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…
I Have Cystinosis, Cystinosis Does Not Have Me!
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…
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…