Gastrointestinal and pancreatic neuroendocrine tumors, also referred to as gastroenteropancreatic neuroendocrine tumors (NETs), are rare tumors formed from cells that have roles in both the endocrine and the nervous system.1 The rarity of neuroendocrine tumors makes them difficult to diagnose and contributes to a lack of available resources and information about the disease.

At least
112,000
people in
the United States are living
with NETs.3
 
While rare, the incidence of NETs has increased 4-6 fold in the past 30 years.2
 
More than 12,000 people are diagnosed with NETs each year.4
NETs can be difficult to diagnose
NETs can be difficult to diagnose
 
NETs can remain undiagnosed for years due to vague abdominal symptoms that can be attributed to other conditions.5
38%
of NET patients experience symptoms for more than 5 years before receiving a diagnosis.6
99%
of patients believe that NETs are not well understood by most doctors.6
35%
of NET patients consult with more than 4 different doctors to determine the cause of their symptoms before being diagnosed.6
NET patients are discouraged by their disease and symptoms
NET patients are discouraged by their disease and symptoms
94%

of NET patients worry about their disease getting worse.6

85%

of NET patients frequently feel frustrated as a result of their disease, from the time that they first start experiencing symptoms.6

22%

of NET patients do not feel that their treatment doctors understand the frustrations they have with their NETS and the symptoms.6

NET patients want more information and resources
NET patients want more information and resources
92%

of patients are actively seeking out information about NETS and learning about available treatment options.6

98%

of patients living with NETs wish there was more information and resources available about their disease.6

50%

of patients prefer to consult online resources first when they have questions about their NETs, before speaking with their doctor.6

In response to this need, Ipsen Biopharmaceuticals, Inc. launched KnowYourNETs.com to serve as an additional resource for people living with neuroendocrine tumors. This website provides patients and their caregivers with access to tools and information about this rare disease.