Cystinosis Foundation UK are supporting research that will help in finding a cure and improving the medicines we have to treat cystinosis.
Cystinosis is a rare inherited disease occurring in about 1 in 200,000 births within developed countries. It occurs when the mechanism removing excess cystine (an amino acid) breaks down.
Cystinosis Foundation UK has multiple aims:
– Provide support to all diagnosed with cystinosis, their families and relatives
– Provide relevant, accessible and up to date information about the disorder
– Publish newsletters containing relevant information for parents and supporters
– Organise or participate in conferences relevant to cystinosis
– Support research into the treatment of cystinosis