Cystinuria – RDG

  • Aims of the Group

    To improve our understanding of kidney stone formation in Cystinuria, develop best practice in the care of patients with this condition and to develop new ways to prevent and treat Cystinuria.

  • Current Activities
    • Building up a national patient registry through RaDaR
    • Establishment of a national genetic Cystinuria screening service
    • Developing patient information material on Cystinuria
    • Development of new molecular models to understand why and how Cystinuria develops
  • International Links

    Pending

  • Patient Support Groups

    Cystinuria UK

    The next Cystinuria Patient Day will be taking place on Saturday March 30th 2019 at Guy’s Hospital, London

    The event is free to attend for patients and relatives but registration is essential via the CystinuriaUK website.

    A draft programme is now available detailing the planned talks and discussion sessions.

    For more information please visit www.cystinuriauk.co.uk/patient-day

    Previous events

    The first Cystinuria Patient Information Day was held on Saturday 1st February 2014 at Guy’s Hospital in London. For further details please click here.

    The second Cystinuria Patient Day was held on Saturday 18th April 2015 at the University of Bristol For further details please click  here.

    The third Cystinuria Patient Day was held on Saturday 5th March 2016 at Freeman Hospital, Newcastle. For further details please click here.

    The fourth Cystinuria Patient Day was held on Saturday 22nd April 2017 at Guy’s Hospital, London. For further details please click here.

  • Reports
  • Group Members
    • Richard Coward, Paediatric Nephrologist, Bristol Children’s Hospital RDG Co-Lead
    • Hannah Rhodes, Paediatric Surgeon and PhD Fellow, Bristol Children’s Hospital and Bristol University
    • John Sayer, Physician, Newcastle
    • Sarah Smithson, Geneticist, Bristol Children’s Hospital
    • Kay Thomas, Adult Urologist, Guy’s and St Thomas’ Hospital RDG Co-Lead
    • Charlie Tomson, Physician, Southmead Hospital, Bristol
    • Maggie Williams, Senior Scientist Genetics, Southmead Hospital, Bristol
    • Mark Woodward, Paediatric Urologist, Bristol Children’s Hospital
  • Disclosure of Conflicts of Interest

    None reported

Cystinuria RDG Version 10 Updated September 2018
Written by the Cystinuria Rare Disease Group