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

How was Living with NETs developed?

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.


What did we do?

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.

How did we do it?

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.

What did we find?

We identified several themes that people living with NETs consistently told us affected them:

  • The everyday symptoms that are not unique to NETs and can be overwhelming or confusing
  • The challenge to find complete, accurate and easy to understand information
  • The length of time to get a correct diagnosis
  • The time and distance to get to a specialist clinic.

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.

Who helped us?

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:

Dr Karen Geboes

Gastroenterologist and Oncologist
University Hospital of Ghent, Belgium

Dr Enrique Grande

Medical Oncologist
Ramon y Cajal University Hospital, Madrid, Spain

Yasmin Chotai de Lima RD MSc

Clinical Lead Dietitian, NET/Oncology
Royal Free London NHS Foundation Trust, London

Dr Mohid Khan

Consultant gastroenterologist and general physician
University Hospital of Wales, Cardiff, UK

Dr Rachel Riechelmann

Medical Oncologist
Hospital Sírio-Libanês, Hospital em São Paulo, Brazil

Rebecca Taylor

NET Clinical Nurse Specialist
University Hospital of Wales, Cardiff, UK

Find out more about NETs

Living with NETs icon

Learn about NETs

Learn about the different types of NETs, symptoms of NETs, their diagnosis and treatment.

Learn About NETs

FAQs by experts


Have a question about NETs? See if it has been answered by one of our experts

View FAQs

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Living with NETs

Information about the emotional, physical and social challenges of living with NETs.

Living with NETs

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This website is intended for an international audience, excluding the UK, United States, Canada and France. This website has been developed by Ipsen in collaboration with those living with NETs and the healthcare professionals who care for them. Ipsen would like to thank everyone for their valuable insights and stories. All names used on this website are not necessarily real names. Visit for more information about us. Website design and development by Kanga Health Ltd. ALL-ALL-002300/November 2020