UK CYSTINURIA PATIENT DAY - We recently held a National Cystinuria Patient Day at The Freeman Hospital in Newcastle on Saturday 27th April 2024. This was co-ordinated by Professor John Sayer. The event was well attended and we heard some fanastic talks from the doctors and patients on the condition. 

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This website was written and designed by a group of interested health care professionals from Guy's and St. Thomas' NHS Foundation Trust and patients, all of whom felt that the current information on the web about cystinuria was limited, confusing and not particularly orientated to British patients. It has been designed to provide clear and concise information for cystinuric patients and/ or their friends and family. Our aim is threefold:

Patients often have common themes to their presentation but because the disease is rare, may not meet other affected individuals, and so are unable to share their stories.

If you feel that anything is incorrect or if there is anything you would like to see on the this website then please contact us and let us know what you think via the Contact/ Feedback form.

The Team at CystinuriaUK

"I have a specialist interest in cystinuria and in particular the preventative measures which may be useful in helping patients have some control over the impact of their disease. I established a multi-disciplinary specialist clinic for cystinuria which has led to the development of this website."

Last Updated: April 2024

Hexagonal cystine crystals under a microscope