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NeST Summer Newsletter 2026

Dear NeST Family,

These heatwaves are challenging, and I hope you have not melted yet! My heart particularly goes out to those of you on a fluid restriction. Just in case we have more hot weather ahead, here are two helpful links and tips for you or your loved one:

If you are still struggling, please do not hesitate to contact your clinician.

AI Research: A Promising Step Forward for Nephrotic Syndrome

This summer I wanted to make you aware of encouraging developments in nephrotic syndrome research, with several new studies showing how artificial intelligence (AI) could transform the way the condition is monitored and treated.

One major Phase 3 study is now testing whether AI can help predict which patients will respond best to rituximab, a key treatment for membranous nephropathy (MN). By analysing antibody levels, proteinuria trends, immune markers, and early treatment signals, the system aims to guide clinicians toward more personalised treatment plans — reducing relapse risk and improving long-term outcomes.

Read more:

Researchers are also exploring how AI can work alongside gut-microbiome analysis to predict relapse before symptoms appear. Early findings suggest that machine-learning models can identify microbiome patterns linked to steroid responsiveness, inflammation, and relapse risk. This could pave the way for non-invasive tests that warn families and clinicians weeks in advance, offering precious time to intervene and potentially prevent a full relapse.

For children, a recent study using bioelectrical impedance analysis (BIA) has shown how AI can help detect oedema more accurately and earlier than traditional methods. The model achieved strong results using simple, non-invasive measurements — raising the possibility that, in the future, a handheld device could help parents monitor their child’s condition at home.

Together, these innovations highlight a growing and hopeful shift toward smarter, more personalised care for everyone living with nephrotic syndrome.

Read more:

National Information Day 2026 at the Manchester Campus

It was lovely to meet up with you all again! I was especially touched that some families travelled many miles from Somerset and Scotland for the day.

Hope on the Horizon: National Projects Unlock New Paths to Better Treatments

We enjoyed fabulous talks by Professor Moin Saleem and Professor Gavin Welsh, who have been working tirelessly for our nephrotic syndrome community and are incredibly excited about their most recent research milestones. They shared their optimism that clinical studies are not too far away now and will keep us updated as they get ever closer.

Thanks to the incredible support of the NeST community, they and their research colleagues are making real, ground-breaking progress in understanding and treating nephrotic syndrome. Two major national projects — NURTuRE and the MRC Precision Medicine Programme — have now completed their initial funding phases, and the rich data and infrastructure they created are already helping scientists push forward new discoveries.

In Bristol, researchers are working on promising drug-discovery projects targeting both genetic and immune-related forms of nephrotic syndrome, bringing us closer to the new medicines families urgently need.

Partnerships with industry are also playing a vital role. Collaborations with pharmaceutical companies and the European Lead Factory are helping researchers test tens of thousands of potential compounds to find those that may reverse disease processes. Several exciting candidates have already been identified and are now being studied further.

Looking ahead, the paediatric kidney community is preparing to launch faster, more coordinated clinical trials of new treatments — boosted by a major £10 million investment from LifeArc. Together, these efforts mark a hugely hopeful step toward better treatments and brighter futures for children and adults living with nephrotic syndrome.

We also enjoyed many wonderful talks on the day, including:

We plan to hold our next National Information Day in the south of England. I will keep you updated in our newsletters and on both our busy closed and public Facebook pages.

Looking Back at the Last Six Months…

The Future of NURTuRE Workshop was held in February in London, hosted by Kidney Research UK, and attended by Rachel Labour (new trustee) and myself. It was well attended by clinicians, researchers, and charity leaders of rare renal-disease groups. It was great listening to talks about the research progress being made from analysing your NURTuRE study samples.

Keep updated here: https://nurturebiobank.org/

Fundraising Events

The research team and I are extremely grateful for your amazing fundraising efforts! Here are some of the events that have taken place so far this year:

As you can see, many varied events have been held all over the UK, which is wonderful. We are incredibly grateful for everyone’s continued support and hard work raising vital funds to keep the research at the University of Bristol moving forward, as well as supporting the ongoing costs of the charity.

NeST urgently needs more volunteers to help fundraise as donations have been lower than anticipated. Please consider organising an event or taking part in one. If you cannot help personally, please encourage family and friends to support us.

T-shirts, vest tops, and fundraising merchandise can be posted out to you — just email me at [email protected] with your requests.

I wish you all an enjoyable and relaxing summer and I’ll be back in touch in the autumn.

Wendy

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