First national forum for patients with rare form of kidney disease held in Manchester to discuss latest research into condition
38 patients with rare kidney disorder membranous nephropathy (MN) and their supporters have come together in Manchester for the first ever national forum to find out more about latest research into the condition.
MN is a kidney disorder that leads to changes and inflammation of the structures inside the kidney that filter wastes and fluids. The inflammation leads to loss of blood protein into the urine and problems with kidney function.
The event took place at the Nowgen Centre on Saturday 19th March and was organised on behalf of the Membranous Nephropathy National Renal Rare Disease Registry (MN RaDaR) Steering Group, supported by charities Kidneys for Life and Kidney Research UK.
Paul Brenchley, Honorary Professor of Renal Immunology at Manchester Royal Infirmary is Chairman of the MN RaDaR Steering Group.
He said: “The purpose of facilitating a national group forum is to allow patients with MN from all over the UK to provide their views and feelings on a variety of issues such as patient involvement in research, current and future treatments and quality of life issues. The views and opinions of patients are very important to us and their input is invaluable in contributing to future treatments and research at the national level.”
Senior Clinical Research Nurse at Central Manchester University Hospitals NHS Foundation Trust (CMFT), Jean Winterbottom organised the day and arranged further support from renal research nurses from 3 other large teaching hospitals in UK.
She commented: “It was great to see patients and carers get together to discuss their individual experiences of living with the condition, sharing stories, support and insight.
“Following on from the very successful event, it’s hoped that patients will now form their own national MN group to give support to each other and also to provide the essential expert patient insight and advice to help design future national research projects and clinical trials in this area.”
Slides and photos from the event can be found here.