Desmoid Tumor Research Foundation
The Desmoid Tumor Research Foundation funds research and shares trusted information about desmoid tumors, a rare type of tumor. It helps patients and caregivers learn about care options, find specialist resources, join research, and connect with others through online tools and events.
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The mission of The Desmoid Tumor Research Foundation is to aggressively fund research to accelerate the development of improved therapies, and ultimately find a cure for desmoid tumors. We... Main Services health education support network virtual support advocacy & legal aid Serving young adults teens recently diagnosed on-treatment cancer all cancer types childhood cancer survivors
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What they offer 12
- Not yet verified
Desmoid Tumor Research FoundationService
- Recently verified· Jun 26
First Steps After DiagnosisService
Online guidance for people newly diagnosed with a desmoid tumor, including education, specialist referrals, clinical trials information, and patient resources.
- Recently verified· Jun 26
Find a PhysicianService
DTRF explains how to look for a sarcoma specialist or multidisciplinary team familiar with desmoid tumors and links to specialist directories.
- Recently verified· Jun 26
DTRF Patient Registry and Natural History StudyProgram
An online registry collects patient survey data about diagnosis, treatment, disease progression, and quality of life to support research.
- Recently verified· Jun 26
Tissue DonationProgram
When surgery is appropriate, patients may consent through Pattern.org to donate excess fresh desmoid tumor tissue for research.
- Recently verified· Jun 26
Clinical Trials InformationService
DTRF provides information to help patients review current clinical trials with their doctor.
- Recently verified· Jun 26
Connect with Your CommunityService
DTRF lists online support groups and local patient advocacy organizations and hosts a biannual virtual roundtable for desmoid tumor group leaders.
- Recently verified· Jun 26
Living with Desmoid Tumors: DTRF Patient Education ExperienceEvent
One-day in-person education events where clinicians share patient-friendly information and patients and caregivers connect with each other.
- Recently verified· Jun 26
2026 DTRF Together We Will WeekendEvent
A three-day gathering for patients, caregivers, clinicians, researchers, and industry professionals with education, networking, research sessions, and wellness activities.
- Recently verified· Jun 26
Travel Access ProgramGrant
Financial assistance may help eligible patients, caregivers, and loved ones with transportation and lodging for the 2026 Together We Will Weekend.
- Recently verified· Jun 26
DTRF International Desmoid Tumor Research WorkshopEvent
A collaborative research meeting where clinicians, researchers, and industry professionals share new desmoid tumor research and shape research priorities.
- Recently verified· Jun 26
Research GrantsGrant
DTRF funds basic, translational, clinical, and computational research projects that advance understanding, prevention, diagnosis, and treatment of desmoid tumors.
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