Welcome to:
The Desmoid Tumor Research Foundation
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Upcoming DTRF Events
DTRF Open House: April 17th @ 1PM ET
DTRF Open House: April 17th @ 1PM ET
DTRF Open House: April 17th @ 6PM ET
DTRF Open House: April 17th @ 6PM ET
Recent Posts
📣 Spread the Word: Desmoid Tumors are NOT benign.
📣 Spread the Word: Desmoid Tumors are NOT benign.
Engage Health: Market Research Study (not affiliated with DTRF)
Engage Health: Market Research Study (not affiliated with DTRF)
📢 Advocate for Desmoid Tumor Research in Congress
📢 Advocate for Desmoid Tumor Research in Congress
5 Calls App: Contact Your Congress
5 Calls App: Contact Your Congress
Download 5 Calls: Contact Your Congress by 5 Calls Civic Action on the App Store. See screenshots, ratings and reviews, user tips, and more apps like 5 Calls:…
🎉 2025 "Together We Will" Weekend in Chicago
🎉 2025 "Together We Will" Weekend in Chicago
📚 Published Research - Nirogacestat: Pathway to Approval
📚 Published Research - Nirogacestat: Pathway to Approval
Give Today: Support Our Mission
Give Today: Support Our Mission
Our Story - Celebrate DTRF's 20th Anniversary
Our Story - Celebrate DTRF's 20th Anniversary
Recent DTRF Videos
🎥 Rare Disease Day Facebook Live: Amy Beitz
🎥 Rare Disease Day Facebook Live: Amy Beitz
🎥 “Reproductive considerations for desmoid tumor patients” with Laurie J. McKenzie, MD
🎥 “Reproductive considerations for desmoid tumor patients” with Laurie J. McKenzie, MD
🎥 “Short and long term side effect considerations of current therapies in the pediatric population" with Aaron Weiss, DO
🎥 “Short and long term side effect considerations of current therapies in the pediatric population" with Aaron Weiss, DO
🎥 “Learning in the basics: Desmoid Tumors 101” with Thierry Alcindor, MD, MSc
🎥 “Learning in the basics: Desmoid Tumors 101” with Thierry Alcindor, MD, MSc
🎥 WATCH: 2024 Patient Meeting Recordings Showcase
🎥 WATCH: 2024 Patient Meeting Recordings Showcase
🎥 Webinar Recording: "Cryoablation: What We Do and Don't Know"
🎥 Webinar Recording: "Cryoablation: What We Do and Don't Know"
✨ Start Here ✨
First Steps: Desmoid Tumor Patients & Caregivers
First Steps: Desmoid Tumor Patients & Caregivers
Newly Diagnosed: What is a desmoid tumor?
Newly Diagnosed: What is a desmoid tumor?
Mental Health Resources
Mental Health Resources
DTRF Patient Brochure
DTRF Patient Brochure
Sign-Up: DTRF Newsletter
Sign-Up: DTRF Newsletter
DTRF Fundraising Toolkit
DTRF Fundraising Toolkit
News & Updates
DTRF Blog Post: 50mg tablet of Ogsiveo® will no longer be available as of January 1, 2025
DTRF Blog Post: 50mg tablet of Ogsiveo® will no longer be available as of January 1, 2025
SpringWorks Statement: "OGSIVEO® (nirogacestat) Now Available in 150 mg and 100 mg Tablets"
SpringWorks Statement: "OGSIVEO® (nirogacestat) Now Available in 150 mg and 100 mg Tablets"
2024 "Together We Will" Weekend and RFA Photos
2024 "Together We Will" Weekend and RFA Photos
Desmoid Tumor Cell Lines
Desmoid Tumor Cell Lines
DTRF Press Release: FDA APPROVES OGSIVEO™ (NIROGACESTAT), AS THE FIRST MEDICAL THERAPY FOR THE TREATMENT OF ADULTS WITH PROGRESSING DESMOID TUMORS. - The Desmoid Tumor Research Foundation
DTRF Press Release: FDA APPROVES OGSIVEO™ (NIROGACESTAT), AS THE FIRST MEDICAL THERAPY FOR THE TREATMENT OF ADULTS WITH PROGRESSING DESMOID TUMORS. - The Desmoid Tumor Research Foundation
SpringWorks CareConnections™ Patient Support Program
SpringWorks CareConnections™ Patient Support Program
Introducing the DTRF Board of Directors
Introducing the DTRF Board of Directors
FDA Press Release: FDA Approves First Therapy for Rare Type of Non-Cancerous Tumors
FDA Press Release: FDA Approves First Therapy for Rare Type of Non-Cancerous Tumors
Archive Post Links
VIDEO SHOWCASE: 2024 DTRF Patient Meeting Recordings on Vimeo
VIDEO SHOWCASE: 2024 DTRF Patient Meeting Recordings on Vimeo
Medical and Scientific Advisory Boards
Medical and Scientific Advisory Boards
VIDEO: "Active Surveillance as a Desmoid Tumor Treatment" with Alessandro Gronchi, MD
VIDEO: "Active Surveillance as a Desmoid Tumor Treatment" with Alessandro Gronchi, MD
VIDEO: "Imaging of Desmoid Tumors" with Robert Lefkowitz, MD
VIDEO: "Imaging of Desmoid Tumors" with Robert Lefkowitz, MD
VIDEO: Dr. Gounder: Nirogacestat Approval Provides First-in-Class Option for Desmoid Tumor Treatment
VIDEO: Dr. Gounder: Nirogacestat Approval Provides First-in-Class Option for Desmoid Tumor Treatment
VIDEO: DTRF Patient Registry & Natural History Study 101 with Dr. Kelly Mercier
VIDEO: DTRF Patient Registry & Natural History Study 101 with Dr. Kelly Mercier
VIDEO: "What We’ve Learned from the International Pregnancy Study" with Marco Fiore, MD, FACS
VIDEO: "What We’ve Learned from the International Pregnancy Study" with Marco Fiore, MD, FACS
Donate Tissue for Research - Desmoid Tumor Research Foundation
Donate Tissue for Research - Desmoid Tumor Research Foundation
Diagnosis Codes & Desmoid Tumors
Diagnosis Codes & Desmoid Tumors
Dr. Jesse Boehm Discusses Importance of Rare Cancer Tissue Donation Through Pattern.org
Dr. Jesse Boehm Discusses Importance of Rare Cancer Tissue Donation Through Pattern.org
Patient Resources
Second Opinion Grants | Sarcoma Alliance
Second Opinion Grants | Sarcoma Alliance
Newly Diagnosed?
Newly Diagnosed?
Diagnosis & Treatment of Desmoid Tumors
Diagnosis & Treatment of Desmoid Tumors
Donate Tissue for Research - Desmoid Tumor Research Foundation
Donate Tissue for Research - Desmoid Tumor Research Foundation
DTRF Desmoid Tumor Patient Registry
DTRF Desmoid Tumor Patient Registry
Published Research Articles - Desmoid Tumor Research Foundation
Published Research Articles - Desmoid Tumor Research Foundation
Global Consensus Paper on the Treatment of Desmoid Tumors
Global Consensus Paper on the Treatment of Desmoid Tumors
FAQs
FAQs
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