Insulinoma Charity

11/10/2026

What a weekend!

Our first Insulinoma Pilot Retreat brought members of our community together for shared experiences, conversation and time to get to know one another. For many, it was the first time meeting someone else diagnosed with an insulinoma.

This is just a glimpse — the full retreat story is coming soon.

Follow Insulinoma Charity UK for more, and share this reel to help others find our community.

09/10/2026

27/09/2026

Our Autumn 2026 Insulinoma newsletter is now available.

For many people affected by an insulinoma, meeting someone else with the condition is an experience they have never had. Creating that opportunity is at the heart of our Insulinoma (Pilot) Retreat, taking place in Wiltshire from 9 to 11 October.

This edition introduces the retreat programme and the specialists, researchers and contributors supporting it. It also looks ahead to the Birmingham 2027 Twentieth Anniversary Insulinoma Retreat, which will be shaped by what we learn from this year’s pilot. Expressions of interest for 2027 are now welcome.

We remember our founding Trustee, Paula Davis, and recognise the volunteers, fundraisers and supporters whose commitment makes the charity’s work possible. We also share news of Enola Wright’s British Empire Medal and our collaboration with UKINETS to make specialist nutritional guidance easier for patients and families to understand.

Insulinoma Charity UK remains entirely volunteer led, with no paid staff or salaries. Thank you to everyone who contributes their time, knowledge and support.

Read the newsletter and download your PDF copy:
https://insulinoma.co.uk/news

Select “Download the latest PDF newsletter” at the top of the page.

Please share it with anyone affected by an insulinoma, their families, carers and healthcare teams.

24/09/2026

Would you like to join us for the 20th Anniversary Insulinoma Retreat 2027?

For many people diagnosed with an insulinoma, meeting someone else with the same condition is something they have never experienced. At the heart of the retreat is a simple but powerful aim: to make that connection possible, creating a sense of understanding, belonging and hope.

Our pilot retreat, from 9 to 11 October 2026, will give people affected by insulinoma time and space to meet, listen to one another and connect. What we learn will help shape the Birmingham retreat in 2027.

The 2026 pilot brings together specialist knowledge and lived experience.

This is a retreat, not a conference. Expert contributions support its central purpose: spending time with people who understand life with an insulinoma.

For 2027, we welcome interest from people affected by insulinoma, carers, families and supporters, clinicians, neuroendocrine experts and researchers, charities and patient organisations, volunteers and potential sponsors.

Whether you would like to attend, share your expertise or help make the retreat possible, please let us know.

Register your interest in the Birmingham UK 2027 Insulinoma Retreat:

https://docs.google.com/forms/d/e/1FAIpQLScMGPyK_QHheRtx27HiPd4X2A9tegmIyueT1BrSyF5HiWWz6w/viewform

Submitting the form is an expression of interest only, not a confirmed booking.

With thanks to Rezolute, Founding Partner and sponsor of the retreat.

Insulinoma Charity UK
Registered Charity No. 1204926

17/09/2026

An insulinoma can affect far more than physical health.

Uncertainty, anxiety and isolation can affect people living with an insulinoma, as well as their families and supporters.

Insulinoma Charity UK connects people through peer support, shared experience and advocacy, helping our community find understanding, confidence, friendship and hope.

Find support. Find understanding. Find your insulinoma community.

17/09/2026

15/09/2026

New research: surgery, ethanol ablation and medical treatment compared

Lu JY, Chou F, Cheng TY, Wen FY, Tien YW, Kuo TC, Chang CC, Wu WC, Chiu WY, Shih SR, Chen PL, Wang CY, Wang HP and Hu FC (2026). Clinical outcomes of medical therapy, EUS-guided ethanol ablation, and surgical resection in insulinoma: a clinical epidemiology study. Frontiers in Endocrinology, 17:1848169. Published 27 July 2026. https://doi.org/10.3389/fendo.2026.1848169

Researchers reviewed 19 people with an insulinoma treated at one hospital in Taiwan between 2011 and 2025.

When grouped by their final treatment, all 13 surgical patients achieved complete remission, compared with 2 of 3 treated using EUS guided ethanol ablation and none of the 3 receiving medical treatment. Medical treatment did, however, help control hypoglycaemia.

Complete remission meant sustained normal blood glucose, no hypoglycaemia symptoms and no further treatment for at least one year.

The findings support surgery as the treatment most likely to achieve remission. EUS guided ethanol ablation may offer a less invasive option for carefully selected people who cannot undergo surgery, although incomplete treatment or recurrence remains possible.

This was a very small, retrospective study. Treatment was not randomly assigned, some patients received more than one treatment and only three people were included in each non surgical group. The percentages must therefore be interpreted cautiously and cannot determine the best treatment for every patient.

IntroductionInsulinoma is a rare pancreatic neuroendocrine tumor causing hypoglycemia. Surgery is the standard treatment, while endoscopic ultrasound (EUS)-g...

11/09/2026

£1,100 raised for Insulinoma Charity UK.

Stefan completed the 43 km South Coast Ultra Challenge in 6 hours and 27 minutes, raising more than twice his original £500 target.

He took on this challenge in memory of Callum Lynch. We are enormously grateful to Stefan and to everyone who supported and donated. These funds will help us continue supporting people and families affected by an insulinoma.

Stefan, you did it. Thank you for every step.

11/09/2026

£1,100 raised for Insulinoma Charity UK

Stefan completed the 43 km South Coast Ultra Challenge in 6 hours and 27 minutes, raising more than twice his original £500 target.

He took on this challenge in memory of Callum Lynch. We are enormously grateful to Stefan and to everyone who supported and donated. These funds will help us continue supporting people and families affected by an insulinoma.

Stefan, you did it. Thank you for every step.