More than 35 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 triggers 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 three 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
"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."
To find out more about renal research at CMFT,