Aims

The Cystinosis Foundation UK aims to:

  • Provide support. 
    We aim to provide support to all diagnosed with cystinosis, their families and relatives.
  • Provide information.
    We shall provide relevant, accessable and up to date information about the disorder, as well as advice on specialist sources of help for new symptoms developing in patients.
  • Publish newsletters.
    Up to date newsletters containing relevant information for patients and supporters will be produced regularly.
  • Organise or participate in conferences relevant to cystinosis.
    We aim to publicise cystinosis to the medical profession (particularly paediatric consultants) so that those born with cystinosis are identified as soon as possible.
  • Support research into the treatment of cystinosis.
    Work with cystinosis related charities worldwide to help co-ordinate research support, maintain awareness of new treatments and seek to understand more about metabolic disorders in general.

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