Charity Status

  • 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’s founder, Jonathan Terry, works for the charity to advise and report to the committee, informing of the work that he is performing on behalf of the charity and of funding requirements necessary to perform the work of the Foundation effectively.
  • Many volunteers are also involved, including a fund-raiser, support group leaders, newsletter editor and website team.
  • The charity is self-funded through donations and also funds Cystinosis research projects at various academic institutes. We are registered with the Fundraising Standards Board, so you can be assured of our committment to excellence in fundraising.

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