Information for patients

ENETS listens to patients.

For people living with NETs, optimal care depends on a strong, multidisciplinary medical team, access to reliable medical information, and a robust support network.

At ENETS, we bring together leading experts in NET care and research, including clinicians, specialised NET nurses, and representatives from patient advocacy organisations. Together, these professionals work collaboratively to improve care pathways and outcomes for patients affected by NET diseases.

ENETS Centers of Excellence (CoEs)

Finding the right support can make a real difference when living with a neuroendocrine tumour (NET). ENETS Centers of Excellence bring together experienced teams who specialise in the diagnosis and treatment of NETs.

While ENETS cannot offer individual medical advice, we encourage you to contact the nearest Center of Excellence if you are seeking consultation or care.

Collaboration

International Neuroendocrine Cancer Alliance (INCA)

The International Neuroendocrine Cancer Alliance (INCA) is a global network of patient organisations dedicated to improving the lives of individuals affected by Neuroendocrine Tumours (NETs). Through its advocacy, INCA works to raise awareness, provide education, and support the global NET community.

ENETS collaborates closely with INCA, engaging in regular exchanges and joint initiatives to advance NET care and support patients. For example, ENETS and INCA host joint sessions during the annual ENETS conferences, bringing together experts, healthcare professionals, and patient advocates to share knowledge and insights. In honour of NET Cancer Day on 11 December, ENETS and INCA traditionally host a joint educational webinar to raise awareness and provide valuable information for patients and their families.

 

INCA Initiatives

SCAN 2025 Global Survey

The Survey of Challenges in Access to Diagnostics, Treatments and Care for NET Patients (SCAN) 2025, led by INCA, invites patients, caregivers, and healthcare professionals worldwide to share their expertise and insights to help map the global NET landscape and drive meaningful change.
The survey is open from 1 September to 30 November 2025.

Think NENs

The #ThinkNENs campaign, led by INCA and supported by ENETS, educates primary care physicians on recognising and managing neuroendocrine cancers (NENs). This initiative aims to improve early diagnosis, ensuring patients receive the right treatment sooner for better outcomes.

Global NET Information Packs

ENETS supports INCA’s mission to meet the global need for reliable and accessible information on NETs. In 2020, ENETS and INCA collaborated to create comprehensive, easy-to-understand information packs on NETs, ensuring that patients and their families have access to clear, empowering resources. The INCA website provides access to free to download factsheets on neuroendocrine tumours in 11 languages.

Patient-Focused Publications

Overcoming Barriers to NET Treatment

Discover the challenges patients with neuroendocrine tumours (NETs) face in accessing diagnostics and treatment in the publication "Global Challenges in Access to Diagnostics and Treatment for Neuroendocrine Tumour (NET) Patients," published in the Journal of Endocrinology on 30 May 2023. This important read highlights the global obstacles impacting timely care for NET patients.