03/01/2026
This is the cancer that took Chandler. Typically in 6 to 9 months but with him only 2 1/2 months after diagnosis. Very few people have survived this cancer.
🎗️ Rare Disease Day 2026 🎗️
Today we raise our voices for those living with NUT carcinoma — a cancer so rare that many physicians will never see a case in their career.🤎
NUT carcinoma is an aggressive cancer caused by a rearrangement of the NUTM1 gene. It can affect children and adults, often striking suddenly and progressing quickly. Fewer than 1,400 cases have been reported in the US annually, and because it is frequently misdiagnosed, the true number may be higher. The median survival has historically been 6–9 months, which is a heartbreaking statistic.
🤎🤎But statistics are not the whole story.🤎🤎
🤎Behind every number is a person. A family. A community.
We know how heavy those statistics can feel — but we also know that hope lives HERE. 🤎
Hope lives in researchers working to develop targeted therapies. 🧪
Hope lives in doctors learning to test for NUT carcinoma sooner. 🧬
Hope lives in clinical trials bringing new options to patients.
Hope lives in advocates who refuse to let this disease remain unknown.💪🏻💪🏻
Rare diseases affect 1 in 10 people collectively — yet each individual diagnosis can feel isolating. That’s why awareness matters. That’s why research funding matters. That’s why we keep sharing.
Today, we stand for:
✨ Earlier diagnosis
✨ Increased research
✨ Access to clinical trials
✨ Support for every patient and family navigating this diagnosis
NUT carcinoma may be rare, but our voices are strong. Together, we are pushing for better outcomes, longer survivorship, and one day — a cure.🤎
🤎Please share. Please learn. Please advocate.