NETs Alliance

04/29/2026

DID YOU KNOW?

Neuroendocrine tumors don’t discriminate. Behind every smile, there’s often a battle. Celebrities like Steve Jobs and Aretha Franklin showed the world it’s possible to shine, even in the face of a rare disease like neuroendocrine tumors. Their courage inspires US
Let’s join the fight against this rare disease.

Share this post to raise awareness about Neuroendocrine Tumors (NETs) and improve outcomes for those affected



📸: Pnegg, Ukjazznews, the independant, BBC, Woodlandscc, speakeragency, vanityFair

03/30/2026

🔔 is on March 31st. Radiotheranostics is an innovative and growing approach in cancer care, one that helps doctors “see” cancer and treat it precisely using tiny amounts of radioactive molecules.
📌 plays a crucial role in NEN treatment and maintaining quality of life during the NEN patient journey.
👉Let’s spread awareness about the growing impact of radiotheranostics in cancer care!
INCA has developed a free patient guide on to ensure NEN patients understand the treatment and can go through it without anxiety.
✅Download the guide in 15 languages: https://incalliance.org/net-info-packs/

03/22/2026

03/02/2026

Living with a rare disorder often means navigating uncertainty, delayed diagnoses and invisible struggles. Too many individuals face this journey feeling unheard, misunderstood or alone.

Raising awareness isn’t just about information, it’s about connection, compassion, and access to support. By sharing knowledge and resources, we help ensure that people living with rare diseases feel seen, supported and empowered to advocate for their health, their mental well-being and their future.

Together, we can turn isolation into community and awareness into action. 💙🦓🦋

02/20/2026

Four types of Lung NETs 🫁

01/27/2026

The zebra has long been the international symbol of neuroendocrine tumors (NETs) .

However, since 2024–2025, many organizations — notably the International Neuroendocrine Cancer Alliance (INCA) — have begun a global rebranding initiative to replace the zebra with a butterfly 🦓 🦋.

01/07/2026

DID YOU KNOW?

The healthcare professionals (HCPs) most often involved in NET diagnosis are Gastroenterologists (20%) and General practitioners (19%).

NET tumors can be slow-growing and symptoms are often incorrectly attributed to more common conditions. So remember, be your own best advocate!


tumeurneuroendocrine netcancer netcancerawareness netawareness nettreatment netcancersupport zebraawarenessribbon invisibleillness netpatientsupport carcinoidcancer

12/25/2025

Why a second opinion matters in NET diagnosis 💬

Insights shared during the 1st Swiss NET Day show that while not all patients sought a second opinion after a NET diagnosis, those who did most often turned to expert specialists — particularly in university hospitals.

These findings highlight the importance of access to specialized care, informed decision-making, and patient empowerment throughout the NET journey.

💙 Asking questions and exploring options can make a real difference.

NETCommunity

12/17/2025

✨ Shedding Light on Neuroendocrine Tumors ✨
Neuroendocrine tumors (NETs), also known as NENs or Carcinoids, are rare diseases that impact every aspect of life—physically and emotionally. They’re complex and need specialized care. Let’s raise awareness, build support, and advocate for better treatments!

12/10/2025

Thyroid cancer was the first cancer to be treated with nuclear medicine, but that doesn’t mean the field has stopped innovating in this disease area. Some patients become refractory to radioactive iodine, meaning that their cancer has stopped responding to the typical 131I treatment. In this first-in-human study, the alpha-emitter 211At was successfully used to treat refractory patients, broadening therapeutic options and resulting in more positive patient outcomes. Read more in this month’s JNM!

12/03/2025

NETs symptoms experienced on a daily basis

Living with NETs have a considerable impact on patients’ personal life.
Patients have numerous ongoing NET related symptoms, such as :

- general fatigue (56%)
- diarrhea (48%)
- abdominal pain and headaches (41%)

Many of these symptoms occurred on a daily basis.

11/26/2025

PHEOCHROMOCYTOMA STAGES - What does it mean ?

Three stages are used for this tumor of the adrenal glands, which are located at the top of your kidneys:

🔸Localized. Your tumor is in one or both adrenal glands.

🔸Regional. The cancer has spread to nearby lymph nodes or other tissues close to where the tumor started.

🔸Metastatic. The disease has spread to other parts of your body, such as the liver, lungs, or bone.