Insulinoma Support Network
A definitive source of knowledge and information about insulinomas
The aim of this site is to create an insulinoma community, raise awareness and to provide up to date, easily accessible information. To date, most of the information on insulinomas is grouped with other rare neuroendocrine tumours. This site will provide a unique platform by bringing together information on this rare condition in one place.
We recognise that many visitors to this site will be outside the UK. Everyone, wherever you are from, is welcome to share your personal experience of an insulinoma. Join a worldwide community of people who have been diagnosed with an insulinoma and find out more from their experience by joining our Facebook Group.
Insulinoma Charity UK (ICUK) is fully committed to ensuring that patients, as well as their families and caregivers, receive the necessary support and information they need to manage this rare condition effectively. The establishment of Insulinoma Charity UK marks a significant milestone in the charity’s journey to promote awareness and understanding of insulinomas. Find out more about Insulinoma Charity UK Registered Charity Number 1204926.
The more we share the more we learn about Insulinomas
What are insulinomas?
Insulinomas are a rare type of functional neuroendocrine tumour usually found in the pancreas. They are called functional because they produce insulin and cause blood sugar levels to drop, quite often dramatically and in 'episodes.'
Even the smallest tumours can cause symptoms connected to hypoglycemia (the medical term for low blood glucose levels). The vast majority are benign (with no spread beyond the pancreas). However, 10% are malignant and by the time of diagnosis will have spread elsewhere in the body, usually the liver. The tumours are generally diagnosed in middle age and slightly more women are affected. If an insulinoma is suspected you may also be screened for a genetic condition called MEN1.
Please donate in loving memory of Callum Lynch
Please support this special skydive fundraiser in memory of Callum Lynch, who sadly died aged 29 after 4.5 years of aggressive treatment for metastatic insulinoma. On 15 August 2026, Callum’s aunty Sandra Lynch, brother-in-law Chris Cosgrove, and cousin Sophie Mercer will skydive from 10,000 and 15,000 ft over Old Sarum, Salisbury, to raise funds for Insulinoma Charity UK. Every donation will help support people affected by insulinoma, raise awareness, and progress our Insulinoma Research Project. Thank you for helping honour Callum’s memory and supporting others affected by an insulinoma.
To donate: https://www.justgiving.com/page/charityskydive-callumlynch