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Desmoid tumor resources

to guide you along the way
desmoid tumor tendril

SpringWorks Therapeutics can help you in providing up-to-date desmoid tumor resources and information to help you navigate your condition.

Know what to ask your doctor about desmoid tumors

You may want to bring this Doctor Discussion Guide with you to your next appointment to help get the answers you need about desmoid tumors.

Desmoid tumors may be rare, but you are not alone

Real Stories From Patients With Desmoid Tumors

Brad’s Story

“I wish I would have sought out other resources, other avenues, other people to talk to. If I hadn’t found the right place, the correct oncologist, I don’t know where I’d be today. Ask questions. Question everything.”

Brad, patient with a desmoid tumor

DeAnn’s Story

“When I found the first couple of patients through the internet, the feeling is super exciting because you’ve never talked to anybody and they’ve never talked to anybody with a tumor either, and you have this immediate bond that you want to share.”

DeAnn, patient with a desmoid tumor

Advocacy Groups and Additional Resources*

You may find it helpful to reach out to the organizations listed below for information, support, or to connect with others who are living with desmoid tumors.

The Desmoid Tumor Research Foundation logo

The Desmoid Tumor Research Foundation (DTRF)

Rein In Sarcoma logo

Rein in Sarcoma

NORD logo

National Organization for Rare Disorders (NORD)

SARC logo

Sarcoma Alliance for Research through Collaboration (SARC)

I am not only a desmoid tumor patient, but I have a desmoid tumor and it is a part of me. Let’s fight, let’s spread awareness. That’s just who I’ve become.

Amy, patient with a desmoid tumor

Amy smiling

You can also visit these websites for additional information about desmoid tumors.

  • Desmoidians on Facebook Link
  • National Cancer Institute Link
  • Find a Sarcoma Center Link

Living with a desmoid tumor can impact both your physical and mental health.1,2 It’s important to take care of both…and it’s OK to ask for help. Here are some mental health resources.

  • Access resources provided by the National Institute of Mental Health (NIMH) Link
  • Access resources provided by MentalHealth.gov Link
  • Search a national network of mental health providers on Psychology Today Link

My big thing is, even though I have this, I’m still a dad. I’m still me. I’m not going to change.

Brad, patient with a desmoid tumor

Brad in a graduation cap

Next: Frequently Asked Questions (FAQs)

SpringWorks Therapeutics is providing these links to help patients find more information about desmoid tumors, but inclusion on this list does not represent an endorsement or a recommendation from SpringWorks for any group or organization. The organizations listed are independent of SpringWorks Therapeutics.

  1. Gounder MM, Maddux L, Paty J, Atkinson TM. Prospective development of a patient-reported outcomes instrument for desmoid tumors or aggressive fibromatosis. Cancer. 2020;126(3):531-539.
  2. Timbergen MJM, van de Poll-Franse LV, Grünhagen DJ, et al. Identification and assessment of health-related quality of life issues in patients with sporadic desmoid-type fibromatosis: a literature review and focus group study. Qual Life Res. 2018;27(12):3097-3111.