
We’re here to find answers with
Research, Advocacy, Awareness, and Support.
The Desmoid Tumor Research Foundation is accelerating the race toward more treatments and a cure for each and every desmoid tumor patient.
You’ve Come to the Right Place
Whether you are a desmoid tumor patient, caregiver, researcher, or clinician, we can help you find answers.
- I (or someone I love) was diagnosed...
- I want to learn about desmoid tumors…
- I am a patient/caregiver looking for a doctor…
- I am a patient interested in participating in research…
- I am a physician looking to help my patient and/or find professional resources…
- I am interested in the DTRF’s research initiatives…
- I want to make a difference…
Stay Up to Date

NOVEMBER 27, 2023
The U.S. Food and Drug Administration (FDA) has approved OGSIVEO™ (nirogacestat) for the treatment of adults with progressing desmoid tumors.
This drug is the first-ever FDA-approved medical therapy for desmoid tumors and represents a beacon of hope for desmoid tumor patients.
News & Updates
Read More
February 12, 2025
Recap: February Patient Education Event in Partnership with Penn Medicine
Read More about Recap: February Patient Education Event in Partnership with Penn Medicine

February 5, 2025
Note to DTRF Patient Registry Participants re: Migration to New Platform
Read More about Note to DTRF Patient Registry Participants re: Migration to New Platform

December 10, 2024
Update: OGSIVEO® (nirogacestat) Now Available in 150 mg and 100 mg Tablets
Read More about Update: OGSIVEO® (nirogacestat) Now Available in 150 mg and 100 mg Tablets
What We Do
The DTRF will stop at nothing to find more treatments and ultimately, a cure for each and every desmoid tumor patient. We’re the world’s leading foundation dedicated to desmoid tumor research, advocacy, awareness, and support.

Impact
We facilitate and fund critical desmoid tumor research. Learn more about the significant advancements that the DTRF has already made.
Connection & Collaboration
The annual DTRF Together We Will Weekend brings together patients, caregivers, clinicians, and researchers from around the world.
This important event facilitates scientific collaboration, fosters patient education and connection, and hosts our largest signature fundraiser. Plan to join the community as we empower patients and caregivers and advance desmoid tumor science.


Resources
We cultivate an empowered community. Be armed with the knowledge to make informed decisions.
Events
Read MoreFebruary 27, 2025 - February 27, 2025
Facebook Live with Desmoid Tumor Patient: Amy Beitz
Read More about Facebook Live with Desmoid Tumor Patient: Amy Beitz
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Global Consensus Paper
