Would you like to be on the committee of the Cystinosis Foundation UK? Our charity is over 10 years old and during this time has run with a small committee of trustees who meet around… Foundation Looking For New Trustee
The Cystinosis Foundation UK conference programme is now available. The conference takes place on September 24th at the Manchester Conference Centre and is due to start at 10.00 and expected to last until 17.00. View… UK Conference Programme Now Available
Raptor Pharmaceutical Phase 3 trials with slow release Cysteamine have yielded positive results and the firm is looking to extend the trial as well as filing for marketing approval in the USA and European Union.… Positive Results On Slow Release Cysteamine Trials
Four friends, hence forth known as the "Berlin Wallies" have signed up to do the Berlin Marathon to raise money for the Cystinosis Foundation UK. The marathon takes place on 25th September 2011 and the… Berlin Wallies Marathon
A sky diving teacher and a week of school fundraising events has raised over £3,000 for the Cystinosis Foundation UK! After hearing how several members of one of her student’s families has Cystinosis, teaching assistant… Sky Dive & School Fundraising Events Top £3,000
A huge number of you have registered your interest in the UK conference and there have been several requests to confirm whether the conference is taking place – the answer is simply “yes” and we… UK Conference Confirmation – September 24th
Congratulations to 27-year-old Geno Bonnalie, of Lewiston, Idaho, USA, who set a new world record for playing the most holes of golf in a week and the greatest number of birdies in a week. Geno… Golfing Record Broken In Aid Of Cystinosis
The Cystinosis Foundation USA has released their July 2011 newsletter detailing their progress in funding research, support for organisations around the world and other activities. Read The Newsletter.
If you or your child suffers from Cystinosis then the CCIR are calling for you to register. The CCIR is the ONLY International Cystinosis Registry in the world, and they need as many Cystinotics to… Have you registered with the Cure Cystinosis International Registry (CCIR)?
The Cystinosis Research Foundation, USA, has released a series of videos from recent events they have undertaken, as well as their 2011 promotional video. This video gives a brief background on Cystinosis and details some… Cystinosis Research Foundation Promotional Video 2011