What are NETs

Neuroendocrine Tumours (NETs) arise from neuroendocrine cells that are found all over the body. NETs occur when neuroendocrine cells stop working normally and start to grow and/or behave abnormally. They can affect people of any age and can grow in many places throughout the body.

Through our work with Public Health England we have gathered data from 2013-2015 which shows that the amount of people diagnosed with a NET has been rising over the past 15 years. Latest statistics show that in England there are 6.2 per 1 million people diagnosed with a NET and around 35 people per 100,000 are living with a NET. We believe this is an underestimate. 

To understand NETs and where they can grow it is important to understand the neuroendocrine system. This system is our communication system in the body coordinating neuroendocrine cells to release hormones and other chemicals that we need for our bodies to work normally. When tumours arise within this system some of the symptoms you may experience pre or post diagnosis can be related to the malfunction of the communication system e.g. the neuroendocrine cells release hormones and chemicals when they shouldn’t do.    

Due to complexity of this form of cancer it is really important that you are cared for by a clinical team with expertise in this cancer type. 

NETs can affect your body, your mind and your life in all kinds of ways and we want to empower you and your loved ones to understand this form of cancer so that you are fully prepared and able to ask questions and feel in control of your care. 

The NET Handbook

Our NET Handbook provides all the information you need to help guide you through your diagnosis, treatments and beyond. 

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NET Factsheets

Read and download information on all types of NETs based on the European Neuroendocrine Tumour Society guidelines.

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Wallet Cards

We have produced handy cards to keep in your wallet in case of an emergency. 

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