This site has been initiated and developed by Ipsen Ltd.
This site has been initiated and developed by Ipsen Ltd.

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

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

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This site is intended for a UK audience only. SOM-UK-003737 September 2018