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.
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
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March 11, 2025
Advocate for Desmoid Tumor Research in Congress
Read More about Advocate for Desmoid Tumor Research in Congress
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
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
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September 12, 2025 - September 13, 2025
2025 DTRF “Together We Will” Weekend
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Global Consensus Paper
