Useful Resources

Insulinoma support groups, guidelines & articles

Insulinoma Support Groups

Diagnosed

If your insulinoma has been biochemically diagnosed (by bloods), please join our Facebook group: Insulinoma - a rare type of functional neuroendocrine tumour

Malignant/Metastatic

If you have been diagnosed with a malignant insulinoma, please join our Facebook group: Malignant Insulinoma

Insulinomatosis or NIPHS

Insulinomatosis or noninsulinoma pancreatogenous hypoglycaemia (NIPHS)

Suspected

If your insulinoma is suspected and you are awaiting a diagnosis, please join our Facebook group: Suspected Insulinoma

Bereavement

If you insulinoma have lost a loved one, please join our Facebook group: Insulinoma Bereavement Support

Insulinoma Community & Awareness

For the latest articles, research and more information about insulinomas visit our Facebook Community Awareness page

Guidelines and Articles

• Withdrawal of life sustaining treatment in advanced metastatic insulinoma
  Dr Deborah Adams and Dr Sophie Rayner, St Luke’s Hospice, Plymouth, UK. March 2025

• Metastatic insulinoma—outcomes in the current era 

  Umesh Masharani, Sheila Lindsay, Farhana Moon, Alan Paciorek, Emily Bergsland
  The Oncologist, oyae275, https://doi.org/10.1093/oncolo/oyae275
  Published: 30 October 2024

• Approach to the Patient: Insulinoma
  Johannes Hofland, Julie C Refardt, Richard A Feelders, Emanuel Christ, Wouter W de Herder The Journal of Clinical Endocrinology & Metabolism, Volume 109, Issue 4, April 2024, Pages 1109–1118, https://doi.org/10.1210/clinem/dgad641 Published: 31 October 2023

• NEW - MALIGNANT INSULINOMA PATIENT LEAFLET - An easy-to-read patient information leaflet summarising the 19-page Clinical Guideline from the European Neuroendocrine Tumor Society (ENETS) 2023, which is the gold standard for managing malignant insulinomas.

• CLINICAL GUIDELINE
  European Neuroendocrine Tumor Society 2023
  Guidance paper for functioning pancreatic neuroendocrine tumour syndromes

• ENETS Consensus Guidelines for the Standards of Care in Neuroendocrine Tumors: Pathology – Diagnosis and Prognostic Stratification 2017 (PDF)

• ENETS Consensus Guidelines Update for the Management of Patients with Functional Pancreatic Neuroendocrine Tumors and Non-Functional Pancreatic Neuroendocrine Tumors 2016 (PDF)

• ENETS Consensus Guidelines Update for the Management of Distant Metastatic Disease of Intestinal, Pancreatic, Bronchial Neuroendocrine Neoplasms (NEN) and NEN of Unknown Primary Site 2016 (PDF)

• ENETS Consensus Guidelines for the Management of Patients with Digestive Neuroendocrine Neoplasms: Functional Pancreatic Endocrine Tumor Syndromes 2012 (PDF)

Organisations

• European Neuroendocrine Tumor Society (ENETS)
  The primary aim of ENETS is to integrate basic and clinical research with teaching and to establish guidelines for the diagnosis and therapy of gastroenteropancreatic neuroendocrine tumors (GEP NETs).

• Neuroendocrine Cancer UK aims to  support and inform patients and families from diagnosis, enabling access to the best care and treatment, whilst stimulating Neuroendocrine Cancer research, increasing national awareness and influencing improvements in outcomes.

  If you or someone close to you have been affected by Neuroendocrine Cancer and you’ve got questions, our Specialist Nurse, Nikie can to help. Talk to the helpline team on our helpline, which is free and confidential – 0800 434 6476 or visit Ask the Nurse - Neuroendocrine Cancer UK

• UKINETs (UK & Ireland Neuroendocrine Tumour Society) represents scientists, nurses, allied health care workers and clinicians involved in providing services to Neuroendocrine Cancer patients.

• AMEND (Association for Multiple Endocrine Neoplasia Disorders) Support and information for people affected by Multiple Endocrine Neoplasia Disorders and  associated endocrine tumours and syndromes Telephone: 01892 516076

• Cancer Research UK - Insulinomas are rare neuroendocrine tumours (NETs) that start in the insulin making cells of the pancreas. They are a type of functioning NETs of the pancreas.

Why read scientific literature about insulinomas?