FOR PATIENTS
Welcome to our dedicated resource hub for newly diagnosed patients.
You’ve been diagnosed. Now what?
A NUT carcinoma diagnosis can feel overwhelming—but you’re not alone.
This diagnosis is rare, but you’re now connected to a global network of researchers, advocates, and families all working toward the same goal: a future with better treatments—and one day, a cure.
Find Support
Discovering the right support can make a significant difference in your journey. Connect with organizations and communities that understand your experience and can provide the resources you need.
First Steps After a NUT Carcinoma Diagnosis
There are steps you can take right now to connect with experts, contribute to research, and find support as you navigate treatment. Here’s where to start:
1
Connect with NUT Carcinoma Experts
We strongly recommend speaking with a medical team experienced in diagnosing and treating NUT carcinoma.
The Dana-Farber Cancer Institute is the leading center for NUT carcinoma care and research, working in close partnership with Dr. Christopher French at Brigham and Women’s Hospital, who first identified the NUT fusion oncogene and leads the International Registry.
2
Explore Trusted Resources and Support
We’re building a growing library of vetted tools, articles, and organizations to help guide you through diagnosis, treatment, and survivorship. You’ll find:
- How to navigate treatment decisions
Questions to ask your doctor - Clinical trial options
Patient and caregiver communities - Mental health and survivorship resources
3
Join the International NUT Carcinoma Registry
Your experience matters. By joining the International NUT Carcinoma Registry, you help researchers better understand this rare cancer and drive the development of new treatments.
The registry collects medical information and, when possible, tumor tissue to support research efforts around the world.
Questions to Ask Your Oncologist
Can I get a second opinion from a center that specializes in NUT carcinoma?
Because NUT carcinoma is so rare, most oncologists have never treated a case before. Getting a second opinion from specialists who understand this cancer can make a huge difference in your care. We strongly recommend:
Contact Dana-Farber Cancer Institute —They discovered NUT carcinoma and have the world’s leading team of specialists who have treated the most patients
Contact UNC Lineberger Comprehensive Cancer Center — They also have extensive experience with NUT carcinoma patients
Ask your current oncologist to consult with these centers — Many doctors are happy to collaborate with specialists when facing a rare cancer they haven’t seen before
What clinical trials or novel therapies (e.g., BET inhibitors, checkpoint inhibitors) are available for my specific case?
With no established standard of care, clinical trials are often the best option. Discuss:
Are there ongoing trials for BET inhibitors (targeting BRD4/BRD3-NUTM1 fusions) or immunotherapy combinations (e.g., checkpoint inhibitors with chemotherapy)?
How do my tumor’s molecular features (e.g., fusion type, PD-L1 status) influence trial eligibility or targeted therapy options?
If surgery or radiation is feasible, how will these be integrated with systemic therapies?
How will we balance treatment aggressiveness with quality of life, and what palliative/supportive resources are available?
What are realistic treatment goals (e.g., tumor control vs. symptom management)?
How will side effects of aggressive therapies (e.g., chemotherapy, radiation) be mitigated?
Can you connect me with palliative care specialists to address pain, fatigue, and emotional needs early in my care journey?
Latest News & Events
Keep in touch with the latest news and events from the NUT Carcinoma Alliance.
November 5-6, 2025 On Wednesday Nov 5th, I had the honor of...
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In Memory of Max Vincze When Suzanne Vincze lost her 22-year-old son...