Supporting the

Neuroendocrine Cancer Community


Our vision is of a world in which people know how to recognise, diagnose, treat, care for, and ultimately, cure patients with Neuroendocrine Cancer.

Neuroendocrine Cancer UK undertakes in-house research as well as supporting external clinical trials.

We recognise the patient voice in research is vital. This voice is a hugely underused expertise in research and we thank everyone who has contributed to any of the research that we have undertaken or supported. Advocacy groups are working globally to increase the patient contribution in research.

We currently have four key areas of research focus:

  • Tumour biology – formation, structure and genetics of tumour cells to try and identify a cause, new and more effective treatments
  • Research into the emotional impact of a diagnosis and living with your disease
  • Effects of long term treatments
  • Research into treatments for high grade disease.

However, we need to have a clear strategy in place in order to produce a patient led research strategy for NETs, NECs, ACC and MCC:

Work planned for 2021:

  • Survey of patient need and perceptions of priorities in Neuroendocrine Cancer research – launching 2021
  • Launch of FIND The Gap Campaign. This campaign will be the overarching name of our research work. FIND the Gap will identify the unmet needs (clinical, physical, informational and psychosocial) and where funds allow support initiatives from laboratory research to ‘real world experience’ data capture which we hope will fill the gaps in knowledge, healthcare provision and policy making.
  • Development of a dedicated research panel for NCUK.

The outcomes of a clear research strategy should enable us to:

  • Understand the needs of the patient community with regard to research
  • Gain a complete understanding of the research landscape in the UK
  • Understand whether or not current research is in line with patient expectation
  • Encourage researchers to focus on projects with greater impact on patient benefit with regard to NETs, NECs, ACC and MCC.

Support Our Research

We want and need more research for Neuroendocrine Cancer. No major research organisation has a dedicated research programme for this cancer type, therefore a vital part of our work is supporting researchers and specialist centres undertaking neuroendocrine research and encouraging more research to be carried out in the future.

**Please ensure that you let us know when donating, that your donation is to go towards research in the message box – You can also take part in a fundraising event and raise funds to support our research.


Gathering data is vital, and we get involved in a number of research projects both Nationally and Internationally, ensuring that the patient perspective is heard.


FIND the Gap

Have your say on UK research projects.