Leicester University recently held an IgA Nephropathy information day for patients and families. The fourth event of its kind took place on October 7, with more than 45 people attending.
The aim of the day was to inform patients, and their families, about the exciting research which is taking place, to help them to understand how IgA nephropathy develops.
Following a morning of presentations, guests were led to the Mayer IgAN Research laboratories where they were able to take part in demonstrations looking at cell slides and samples and how data is analysed.
Kidney Research UK patient involvement coordinator Sarah Harwood said: “It was an amazing day for patients to meet others with the same condition and to be able to share their experiences. Having access to expert researchers and clinicians and being able to question them directly is just unheard of and it made the experience unique.
“While I wouldn’t expect everyone to have understood all the detailed science, I certainly didn’t, there was so much to take away from the day – whether it was seeing the research first-hand or connecting with fellow patients or just seeing the hope for the future – it was a really worthwhile event and one we plan to replicate in the future.”
Kidney Research UK are dedicated to helping patients engage with research and are keen to support any groups interested in this aim.
There is a grant scheme open to provide funding for anyone interested in organising a meeting that will:
- Share information about research in a meaningful and empowering way
- Engage patients in debate about the future of research
- Share information on how patients can be involved in all stages of research
- Have a high level of participation from patients sharing their experiences and views.
Find out more about patient involvement and our patient information days grant scheme.
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