- The Cystinosis Foundation UK is a UK registered charity — Charity No.1074885. For more information see: UK Registered Charities.
- The Cystinosis Foundation UK now has a board of seven trustees and in April 1999 achieved charity status. The Board of Trustees will always be made up of a minimum of three people who will meet on a regular basis.
- The charity is self-funded through donations and also funds Cystinosis research projects at various academic institutes.