Raptor Phase 3 Trials Begin
Raptor Pharmaceuticals in the USA have completed the recruitment of 30 patients for phase three trials of their new slow release
Summer Concert For Cystinosis
The Folkestone & Hythe Orchestral Society’s Annual Summer Concert will be held on Saturday 9th July 2011 at the Saga Pavilion, Sandgate. On this occasion the Society has elected the Cystinosis Foundation UK as their…
Review of 2010
I’ve been involved with the Foundation now for around 6 years. Over those years I’ve had the opportunity to meet with many inspiring individuals, hear from people training and then succeeding in a particular challenge…
Winter Training
We all appreciate running a marathon requires dedication and training. However, it’s easy to forget just quite what that means in practice – how far ahead training must begin and how much must be done,…
November Newsletter Released
Issue 19 (November 2010) of our newsletter has recently been published and if you are a member of the Foundation you should receive your copy soon, or you can download it directly from the website…
International Cystinosis Conference 2010
The 6th International Cystinosis Conference took place between Thursday 23rd and Sunday 26th September 2010, at the Village Getur (a dedicated Olympic standard training facility and conference centre) in Lignano, near Venice, Italy. Around 200…
London Marathon Place Confirmed
We are very pleased to announce that Martin Kemp has managed to secure a place in the 2011 London Marathon. Martin has already started his training, which has included participating in several local runs, but…
£200,000 Target Reached!
It is with great pleasure that I can report that our research funds appeal has now raised over £200,000 since it was launched – in fact precisely £206,605.66. The appeal initially had an optimistic hope…
Funded Equipment For Sunderland
The Cystinosis Foundation UK chairperson, Roy Forsyth, reports on a recent visit to Sunderland University to present new equipment funded by a donation by the UK Foundation: "As part of our ongoing work with Sunderland…
Cure Cystinosis International Registry
The Cystinosis Research Foundation in collaboration with the Cystinosis Foundation UK and other key Cystinosis leaders and organisations around the world have launched a patient-based international Cystinosis registry. The Cure Cystinosis International Registry (www.cystinosisregistry.org) will…