Since surgeries in desmoid tumors have become less frequent, there is an increased need for fresh desmoid tissue samples for research.

The Desmoid Tumor Research Foundation is supporting the Rare Cancer Research Foundation’s research initiative,, to learn more about desmoid tumors and potential treatments. In order to pilot new technologies in desmoid tumors, our researchers need to acquire fresh tumor samples.

As a patient, YOU can help support this research by donating excess tumor tissue from your upcoming surgery.

All you need to do is fill out an online consent form prior to surgery at and they will handle all the arrangements, working with your surgical institution. There is no cost or any additional effort on your part to participate! Due to several regulatory issues involved with transporting living tissue across the border, currently, currently can only accept tissue from the contiguous U.S. As always, thank you to those within our community who are willing and able to support this exciting research initiative!

Please feel free to reach out to us here with any questions.