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Tiopronin shortage is ongoing (11/4/17) and our importers have told us they are still unable to get supplies. We will continue to update this page when more information is available. 

Patient Day.  The next meeting will be on 22nd April 2017 at Guy's Hospital in London. The EventBrite registration is now closed. If you wish to come please let us know via the Contact/ Feedback page on this website. The programme can be viewed here.

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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This website was written and designed by a group of interested health care professionals 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:
  1. To help patients develop a better understanding of cystinuria.
  2. To offer specific information about the investigation and treatment of cystinuric stones.
  3. To improve the non-surgical management of stones, and in particular to improve efforts to prevent stones through changed diet.
    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 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
    • Miss Kay Thomas, Consultant Urological Surgeon
    "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."
    • Mr Matthew Bultitude, Consultant Urological Surgeon

    Disclaimer: All the information contained on this website is for education and information only. This does not replace advice from an appropriately qualified doctor. If you are unwell or require medical advice, help or treatment you should consult your doctor or urologist. Whilst we have taken every care to ensure that the information contained in this website is accurate, complete and up-to-date, we cannot guarantee this. Links from this site to other websites are provided for information and convenience only. We cannot accept responsibility for their availability or the information they contain. We do not endorse any particular sites.
    Copyright:     All material on this site is subject to Copyright ©. You may not reproduce any content from this website without obtaining permission from the authors.
    Last Updated: January 2017
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