Aims
We Shall:
Provide support to all diagnosed with cystinosis, their families and relatives.
Provide information about the disorder and advice on specialist sources of help for new symptoms developing in patients.
Publish newsletters containing relevant information for patients and supporters.
Organise or participate in conferences relevant to cystinosis.
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.
International Conference
