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Tiopronin shortage. We are aware of a shortage in the UK of tiopronin. Our importers have told us they are unable to get supplies. We will update this page when more information is available.
Patient Day. Next meeting likely to be in London in April 2017. Details of previous meeting is available under 'Patient Support Group' the Rare Renal Disease Website.
Recruitment of patients onto the Rare Renal Registry is going well. Please check with your specialist whether your data has been entered (you will have been asked for consent).
Our recent publications 2016:
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The website has been written and designed by healthcare professionals from Guy's and St. Thomas' NHS Foundation Trust with significant contributions from several patients who wish to remain anonymous.
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."
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