The Cystinosis Foundation UK has a small dedicated team of trustees that run its operation, these trustees are all volunteers and carry out their duties in their own time.
To keep the charity moving forward in the future we need to bring in more people to help with running the operations.
As a charity we have stated our aims and these are listed below.
The Cystinosis Foundation UK aims to:
We aim to provide support to all diagnosed with cystinosis, their families and relatives.
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.
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.
There is a legal side to becoming a trustee and information on that can be found at www.gov.uk and enter “charity trustee“ into the search box.
The Cystinosis Foundation UK does have appropriate systems in place to protect individuals who join us.
So if you think you want to become more involved then drop us a short note through our contact page, selecting general contact. In the message box please just tell us why you want to be involved and what you think you can offer.
Closing date for applicants is 30th January 2015.