This website is intended for an international audience, excluding the UK, United States, Canada and France
This website is intended for an international audience, excluding the UK, United States, Canada and France
Information about the emotional, physical and social challenges of living with NETs.
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If you’re living with neuroendocrine tumours (NETs) and you’re looking for clinics in your region and patient support services, then you’ve come to the right place. Search through the Get Support resources listed here to see if any of these can help you.
Living with NETs is an online resource provided by Ipsen that provides information about neuroendocrine tumours (NETs) or neuroendocrine neoplasms (NEN) and support for those living with neuroendocrine cancer.
The website aims to support people throughout their journey with NETs. This includes providing information about possible symptoms of NETs to help set people on their way to a correct diagnosis and information on the different types of treatment for NETs. To show what is it like to be living with NETs, the website provides real-life patient stories and answers to some common questions about NETs. There are also some practical tips and advice on how to adapt to life after a diagnosis of NETs.
Living with NETs is the result of much detailed research and planning and is grounded in patient needs. The site was conceived, developed and fine-tuned with major input from those living with NETs as a friendly, useful resource for help and support to patients and those close to them at each step of their journey.
We researched what patients said they needed by looking at the results of an international survey that had more than 890 responses. We then worked with five patient groups across four countries and conducted more than 20 in-depth telephone interviews with both patients and doctors.
We assessed hundreds of sites to analyse which resources and support are currently available for patients with NETs to identify the gaps we wanted to fill. We worked with patient associations to find a group of people happy to share their stories and journeys with us, to help us learn what we needed to do and with whom we ran three full days of workshops. We are delighted to be able to feature our patient panel throughout the site.
We identified several themes that people living with NETs consistently told us affected them:
Based on these insights, together with our patient input and invaluable feedback from the healthcare professionals that treat them, we were able to develop Living with NETs: a collection of content, services and tools that we will be regularly updating and releasing.
Living with NETs has been developed in close collaboration with patients and the healthcare professionals who treat them.
Ipsen would especially like to thank all of the patients who have helped to develop this website and who have shared their experiences, agreed to be filmed, provided their feedback, and suggested practical tips to us.
We would also like to gratefully acknowledge the following healthcare professionals:
Gastroenterologist and Oncologist
University Hospital of Ghent, Belgium
Medical Oncologist
Ramon y Cajal University Hospital, Madrid, Spain
Clinical Lead Dietitian, NET/Oncology
Royal Free London NHS Foundation Trust, London
Consultant gastroenterologist and general physician
University Hospital of Wales, Cardiff, UK
Medical Oncologist
Hospital Sírio-Libanês, Hospital em São Paulo, Brazil
NET Clinical Nurse Specialist
University Hospital of Wales, Cardiff, UK
Learn about NETs
If you have – or someone you know has – neuroendocrine tumours (NETs) or possible symptoms, then learning more about NETs may help reassure you that there are treatments available and many people live with NETs for long periods with relatively normal lives.
Learn about the different types of NETs, symptoms of NETs, their diagnosis and treatment.
Information about the emotional, physical and social challenges of living with NETs.
Living with NETs - your resource for neuroendocrine tumours information and support 
