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 latest Cystinuria Patient Information Day was held at Guy’s Hospital, London on Saturday 22nd April 2017

    The day was designed for patients, families and carers to learn more about Cystinuria and to meet other people with the condition

    Further details can be found at www.cystinuriauk.co.uk

    Cystinuria Patient Day flyer

    Cystinuria Patient Day Programme

    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.

  • 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 8 Updated April 2017
Written by the Cystinuria Rare Disease Group