Newly-Diagnosed? - Desmoid Tumor Research Foundation


If you’ve been diagnosed with a desmoid tumor, please know that you are not alone.

The mission of The Desmoid Tumor Research Foundation is to aggressively fund research to accelerate the development of improved therapies, and ultimately find a cure for desmoid tumors. We collaborate with dedicated researchers and clinicians worldwide to improve the lives of patients through education, awareness, and support.

Here are important first steps for you in dealing with this new diagnosis:


1- Learn as much as you can about desmoid tumors to ensure that you get the best care possible. YOU are your best advocate.


 2- Receive regular updates about the latest research findings, clinical trials, and DTRF activities.


3- Find a sarcoma specialist.

Finding the right doctor who can partner with you is essential. It is recommended that you be evaluated in a major academic hospital with experts in sarcoma, by a multi-disciplinary team including a surgeon, medical oncologist, radiation oncologist, geneticist, and nurse.


 4- Help accelerate desmoid tumor research by donating tissue if you have surgery and email us if you are interested in participating in our patient registry.

  • Our patient registry is almost up and running! Email us at if you are interested in participating and we will contact you as soon as it launches.
  • If you’re contemplating surgery, sign a consent form online to have tissue donated to research at


5- Get connected.


6- Save the date!

  • Join us for our Patient Meeting and Running for Answers 5K in Philadelphia during the 4th weekend in September.
  • Read about the DTRF Patient Meeting which provides access to information and community. You’ll have opportunities to connect with other patients, ask the experts questions and leave the weekend feeling hopeful.


7- Get involved by supporting the Foundation. This is YOUR research. Working together, we will find a cure for desmoid tumors.


Do you live in Canada?

If you live in Canada, get connected through the Desmoid Tumour Foundation of Canada at