The Patrick Woepse Foundation

About the Foundation

Honoring Patrick Woepse’s life while raising awareness for NUT Carcinoma

Our mission is to honor Patrick Woepse’s life while bringing awareness and support to NUT Carcinoma and other rare cancers. The pillars of our foundation are built upon Patrick’s legacy, innovative collaboration, hard work, and resilience. Our team's vision within the cancer community is to aid and advocate for rare cancer research and trials, patient and family care, and areas we find that need change within the NUT Carcinoma community.

About NUT Carcinoma

What is NUT Carcinoma?

A rare and aggressive cancer, primarily diagnosed in young adults. NUT Carcinoma is a midline cancer, meaning it is found in the head, neck, chest (lung) or abdomen. Symptoms include unintentional weight loss, fatigue, pain, cough and shortness of breath.

One of the most concerning aspects of NUT Carcinoma is its rapid progression and resistance to standard cancer treatments. Because it is so rare, it is often misdiagnosed or discovered at an advanced stage, making it difficult to treat. Researchers are actively working to develop better therapies.

Advocacy and Awareness

The Patrick Woepse Foundation is proud to walk alongside the Max Vincze Foundation and be a part of the NUT Carcinoma Alliance. Our organization is doing everything this 2025 year to educate and raise awareness about NUT Carcinoma and the team of doctors and researchers studying this rare cancer.

We are collaborating with team at the Dana-Farber Institute, Crabtree Lab at Stanford and UNC to offer our support and funds to help push for change.

Dana-Farber Institute: NUT Carcinoma Discovery and Therapy Development

– Discovered and named NUT carcinoma in the early 2000s

– Discovered the NUT-fusion cancer protein that causes NUT carcinoma (2000’s)

– Developed the most commonly used test to diagnose NUT carcinoma (2009)

– Established the International NUT Carcinoma Registry to determine clinical features of NUT carcinoma and best therapy (2010)

– Discovered the first direct inhibitor of the NUT-fusion cancer protein, called BET inhibitors. (2011)

– Have and currently lead multiple trials of BET inhibitors in NUT Carcinoma patients (2011-present)

– Discovered a new group of helper proteins (these are called EZH2, CDK4/6) that are needed by NUT carcinoma cells to grow, providing a new way to treat this disease (2018-2023)

– Running a new clinical trial combining drugs that inhibit both the NUT-fusion protein and the helper proteins (CDK4/6) (2023-present)

– Working with an internationally recognized immunologist to use the immune system to fight NUT carcinoma (2020-present)

– Organized the first International Symposium on NUT carcinoma (2021)

– Created the first and most human-like mouse model of NUT carcinoma that is crucial for using the immune system to kill NUT carcinoma (2023-present).