NETs Alliance

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

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. 💙🦓🦋

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 🦓 🦋.

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

✨ 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!