You are not alone

How many people have GEP-NETs?

GEP-NETs are classed as a rare disease. In 100,000 people, you would statistically expect to find between 2 and 5 people with GEP-NETs.1

Unfortunately, as GEP-NETs are so rare there isn’t a lot of information about them, so it’s hard to give exact numbers.

What we do know is….

  • Less than 1% of new cancer diagnoses are for GEP-NETs (about 0.5%)2
  • The number of people with GEP-NETs is growing. This might be because:1-4
    • More people are getting the condition and/or
    • People are becoming more aware of GEP-NETs and
    • Doctors are getting better all the time at testing for and diagnosing GEP-NETs


  1. Kizilgul M, Delibasi T. Review article: Gastroenteropancreatic neuroendocrine tumors (GEP-NETs). Transl Gastrointest Cancer 2015;4(1):39-56.
  2. Oronsky B et al. Nothing but NET: A review of Neuroendocrine Tumors and Carcinomas. Neoplasia 2017;19(12):991-1002.
  3. Dasari A et al. Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors in the United States. JAMA Oncol 2017 1;3(10):1335-1342.
  4. Chauhan A et al. Global burden of neuroendocrine tumors and changing incidence in Kentucky. OncoTarget 2018;9(27).