Insulinoma Charity UK (ICUK)
Support, education, advocacy, awareness and research
Insulinoma Charity UK is the first UK registered charity dedicated exclusively to supporting people affected by an insulinoma and related conditions.
Our story
Enola Wright BEM founded the Insulinoma Support Network in 2007 after being diagnosed with a metastatic insulinoma. In September 2023, it became Insulinoma Charity UK, registered charity number 1204926.
We are run entirely by volunteers, with no paid staff or salaries. Every volunteer has personal experience of an insulinoma through their own diagnosis. That experience shapes our work and the support we offer.
Our community
We lead the largest peer support community of its kind. Our private communities bring together people at different stages of diagnosis, treatment and recovery so they can share experiences and support one another.
Our August 2026 information records:
1,600+ people in the suspected insulinoma community.
1,100+ people in the diagnosed insulinoma community.
103 people in the metastatic insulinoma community.
42 people in the NIPHS and related conditions community.
What we do
We provide peer support, trusted information and education for people affected by an insulinoma, their families and carers. We help people understand and manage the challenges of a rare and complex condition that can leave them feeling isolated.
We speak up for patients, raise awareness and support research. We also work to improve understanding of insulinoma among health professionals and the public.
The Insulinoma (Pilot) Retreat
The pilot retreat grew from a need identified by our community: to connect with other people who understand. Many people affected by an insulinoma have never met someone else with the condition.
The retreat will bring a small group together for peer support, specialist education, reflection and practical learning. What we learn from the pilot will help shape our twentieth anniversary retreat programme in 2027.
Contact us
Founder and Chair: Enola Wright BEM
Email: insulinoma@googlemail.com
Registered charity number: 1204926
Based on About Insulinoma Charity UK, August 2026.