Desmoid Tumor Ally Educational Program

This site is intended for US audiences only

Springworks logo

It’s time to take action Before desmoid tumors take over

Discover Care Options
Tendrils wrap around a woman's leg as she walks her dog.

Desmoid Tumors: The Basics

Desmoid tumors are rare and locally-aggressive growths. They are not commonly known or understood, and being diagnosed with one can leave you with more questions than answers.1-3 Doctors have described desmoid tumors as having “tendril-like” growths because of how they look and how they can invade surrounding parts of your body. These “tendrils” can grow unpredictably.2

You don’t have to feel like your desmoid tumor is taking over your life. Understanding this condition is the best way to have a voice in your care. It’s also important to know what to ask your doctors and care team—so you can have a better understanding of the condition and its impact on your life. Learn more about desmoid tumors>

Diagnosis icon

Confirm Your Diagnosis

Learn information that can help you get a timely and accurate diagnosis.

Learning you have a desmoid tumor
Management icon

Approaches to Care

Surgery is no longer recommended as the first option for treating desmoid tumors in most locations.4,5 Learn what experts now recommend.

How desmoid tumors are managed

Learn more about the Desmoid Tumor Ally Educational Program

Meet the Allies who share real-world experiences and stories

  • Learn from medical experts with in-depth information about desmoid tumors
  • Discover how you can find support, and gain a sense of community, from other people living with desmoid tumors
  • Join an event live or online—find out how you can advocate for your care


This free program is sponsored by SpringWorks Therapeutics, Inc.

Brad, Desmoid Tumor Ally
Explore the Program

Next: About Desmoid Tumors

  1. Cancer.Net. Desmoid tumor: statistics. Accessed February 12, 2023. https://www.cancer.net/cancer-types/desmoid-tumor.
  2. Kasper B, Baumgarten C, Garcia J, et al. Desmoid Working Group. An update on the management of sporadic desmoid-type fibromatosis: a European Consensus Initiative between Sarcoma PAtients EuroNet (SPAEN) and European Organization for Research and Treatment of Cancer (EORTC)/Soft Tissue and Bone Sarcoma Group (STBSG). Ann Oncol. 2017;28(10):2399-2408.
  3. Penel N, Chibon F, Salas S. Adult desmoid tumors: biology, management and ongoing trials. Curr Opin Oncol. 2017;29(4):268-274.
  4. Referenced with permission from the NCCN Guidelines for Patients® for Soft Tissue Sarcoma 2023. © National Comprehensive Cancer Network, Inc. 2023. All rights reserved. Accessed July 24, 2023. To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use, or application, and disclaims any responsibility for their application or use in any way.
  5. Gronchi A et al. Desmoid Tumor Working Group. The management of desmoid tumours: a joint global consensus-based guideline approach for adult and paediatric patients. Eur J Cancer. 2020;127:96-107.