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.
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.
News & Updates
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June 6, 2024
Updated Desmoid Tumor Treatment Guidelines, funded in part by DTRF, Published in JAMA Oncology
June 6, 2024
DTRF Executive Director Lynne Hernandez served as a faculty member this year at an educational session – 2024 Annual Meeting for the American Society of Clinical Oncology (ASCO)
March 3, 2024
Young Adult Virtual Event Series: “Times Are A-Changin’: Heading into Young Adulthood with a Desmoid Tumor.”
Events
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November 23, 2024 - November 23, 2024
El Tour de Tuscon: Cycling Event
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Global Consensus Paper
