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Neuroendocrine Cancer Advocacy and Policy Toolkit

INCA developed the Neuroendocrine Cancer Advocacy and Policy Toolkit with contribution from INCA members, neuroendocrine cancer medical experts from different countries across the globe and with consultancy input from Patvocates.

Advocacy is at the heart of what INCA stands for; we all want improved services for patients, better healthcare systems and equitable access to diagnostics, treatment and care. In whatever way we try to achieve these goals, it requires us to convince others that there is a need, and that there are better ways to do things.

The Neuroendocrine Cancer Advocacy and Policy Toolkit is to help INCA member organizations to advocate for optimal and equitable diagnostics, treatment, and care for people with neuroendocrine cancers.

This toolkit contains guidance, tools and resources that will help neuroendocrine cancer patient organizations to work more effectively with those who make decisions about the healthcare system.

The toolkit includes the following topics:

  • Advocacy Essentials
  • Policy and Evidence: Strategies for policy change, templates and INCA case study
  • Policy Recommendations: How to create statements with evidence, how to explain neuroendocrine cancers to policy makers, templates of letters and resources
  • Health Technology Assessment (HTA): What is HTA and how to work with it
  • How to work with patient and umbrella organizations: Tips and templates
  • How to work with governmental organizations and politicians: Tips and ideas
  • How to work with medical and professional societies: Tips and INCA case study
  • NET Patient Pathway: Ideal pathway and challenges. Suggested initiatives and tools along the pathway to address challenges.

The Neuroendocrine Cancer Advocacy and Policy Toolkit is designed for the benefit of INCA member organizations and it is not published for public use.

If you have questions, please write to

This project is supported by grants from AAA, Ipsen, ITM, Camurus and Novartis.