National Nephrotic Syndrome Patient Information ... National Nephrotic Syndrome Patient Information
National Nephrotic Syndrome Patient Information ... National Nephrotic Syndrome Patient Information
National Nephrotic Syndrome Patient Information ... National Nephrotic Syndrome Patient Information

National Nephrotic Syndrome Patient Information ... National Nephrotic Syndrome Patient Information

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  • National Nephrotic Syndrome Patient Information Event 2020

    This year’s Patient Information Event will be a virtual experience. Patients and their families are welcomed to attend and use this opportunity to pose their questions regarding the COVID-19 situation and any other concerns that they may have to Health Care Professionals from across the United Kingdom. We understand that most patients have been isolating in this difficult time and may have fears and anxieties surrounding returning to work, school and social distancing. This event will provide them the platform to raise these concerns and a unique opportunity to network, meet and interact with others in this very isolating time.

    The scheduled Zoom meeting will be held on

    Friday June the 26th at 11:00am until 1pm (UK time).

    Join the Zoom Meeting via the link below:

    https://zoom.us/j/93687078286

    Meeting ID: 936 8707 8286 One tap mobile

    +442034815240,,93687078286# United Kingdom +442080806591,,93687078286# United Kingdom

    Please join the meeting with your microphone and video off and only use the comment box to ask a question or to write a comment. Wendy Cook will be chairing the meeting and will read out your questions and direct them to the relevant person on the panel. If you would like to direct your question to a specific individual on the panel please state this in your comment and we will do our best to accommodate this.

  • Members of the Panel were chosen by popular demand and include:

    Yincent Tse: a children’s kidney consultant in Newcastle Upon Tyne. He is the current secretary for the British Association for Paediatric Nephrology (BAPN) and during the COVID pandemic has been working with the UK children’s kidney units, patient groups, professional associations and government bodies to collect data and produce guidelines for children with kidney diseases. His professional interest is in improving the patient experience and quality improvement in healthcare.

    Kjell Tullus: is a consultant paediatric nephrologist at GOSH. His main interests include: inflammatory kidney disease, renovascular hypertension, nephrotic syndrome and urinary tract infections. Hazel Webb: Clinical nurse specialist in nephrotic syndrome at Great Ormond Street Hospital for children, London.

    Ben Reynolds: is a consultant paediatric nephrologist at the Royal Hospital for Children, Glasgow. He is the clinical lead for transplantation, and for renal research. His personal research interests include immunomodulation and the role of the regulatory immune system in transplantation and immune-mediated renal disease.

    Rachel Lennon: is a Professor of Nephrology at the University of Manchester and a Consultant Paediatric Nephrologist at the Royal Manchester Children’s Hospital, UK. Rachel’s research is focused on understanding mechanisms of glomerular disease, the leading cause of chronic kidney disease in adults and children

  • Siân Griffin: is an Adult Nephrologist in Cardiff, Wales, with a specific interest in glomerular diseases such as Nephrotic Syndrome and kidney transplantation. She is the General Secretary of the British Transplantation Society. Siân is the adult lead for the Cardiff Young Adult Kidney Clinic and sees women with kidney disease during their pregnancy. Her research interests include recruitment to clinical trials.

    Martin Christian: has been a consultant paediatric nephrologist in Nottingham since 2004. He is the network lead for the East Midlands, East of England and South Yorkshire (EMEESY) Children’s Kidney Network. He was the secretary to the BAPN between 2013 and 2016. Since 2018, he has served as a councillor for the European Society for Paediatric Nephrology. His clinical and research interests are in nephrotic syndrome and transplantation. In 2018, he took over from Prof Nick Webb as the chief investigator for the PREDNOS 2 multi-centre study which evaluated the effectiveness of using daily low-dose steroid to prevent NS relapses caused by upper respiratory tract infection. The results of this study will be available later this year. He is currently applying for funding for a further large multi-centre study to see whether relapses might be treated as effectively with smaller doses of steroid.

    Ania Koziell: is a HEFC Senior Clinical Lecturer in the Faculty of Life Sciences and Medicine at King’s College London and a Consultant Paediatric Nephrologist at Evelina Children's Hospital London. As a practising nephrologist, she is the clinical lead for primary and inherited glomerular disease in children at Evelina. She is also heavily embedded in research at King’s College and interests are the genetics of kidney disease including nephrotic syndrome, implementation of pioneering novel treatments such as Liposorber for pre- and post-transplant nephrotic recurrence and mechanistic research into the role of lipids in nephrotic syndrome. Additionally, she is involved in the roll out of genetic testing to kidney medicine through implementing genomic sequencing of patients with rare diseases within the NHS. She is a principle investigator for various rare kidney disease consortia and interventional trials in nephrotic syndrome. Ania is also a member of the Kidney Genomics England Clinical Interpretation Partnership.