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.

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Whether you are a desmoid tumor patient, caregiver, researcher, or clinician, we can help you find answers.

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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.

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Read Published Article on Pathway to Approval

News & Updates

September 4, 2025

Newsweek Article Shines a Light on Desmoid Tumors and Other Rare Diseases

September 1, 2025

September is Desmoid Tumor Awareness Month!

July 28, 2025

Want to make a real impact in the desmoid tumor community?

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.

Our Strategy & Impact

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.

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