Welcome to:

Welcome to: has been a member of Linktree for 4 years and joined in August 2021. The social media accounts linked to from Welcome to: are: • Facebook • Instagram • Email • X Besides social media accounts, dtrfoundation has populated their site with: • Engage Health: Market Research Study (not affiliated with DTRF) • ‎5 Calls App: Contact Your Congress • 📢 Advocate for Desmoid Tumor Research in Congress • 📚 Published Research - Nirogacestat: Pathway to Approval • 🎟️ Register Today: "Ask the Radiologist: Q&A Virtual Event" • 🎥 Rare Disease Day Facebook Live: Amy Beitz • 🎉 2025 "Together We Will" Weekend in Chicago • 🎥 “Reproductive considerations for desmoid tumor patients” with Laurie J. McKenzie, MD • Our Story - Celebrate DTRF's 20th Anniversary • 🎥 “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 • DTRF Open House: April 17th @ 6PM ET • DTRF Open House: April 17th @ 1PM ET • ✨ We're Hiring: DTRF Operations Manager • 📣 Spread the Word: Desmoid Tumors are NOT benign. • 🎥 WATCH: 2024 Patient Meeting Recordings Showcase • 🎥 Webinar Recording: "Cryoablation: What We Do and Don't Know" • Give Today: Support Our Mission • 🎥 WATCH: "Why I Give" Video • First Steps: Desmoid Tumor Patients & Caregivers • 🎟️ Register: DTRF Lunch N' Learn - "Reproductive/fertility considerations for desmoid tumor patients" - Jan. 29th • Newly Diagnosed: What is a desmoid tumor? • Mental Health Resources • DTRF Patient Brochure • Sign-Up: DTRF Newsletter • DTRF Fundraising Toolkit • Learn More: Rare Disease Day 2024 • Interest Form: 2024 Patient Advocacy Committee • Make It Possible 2024! • 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" • 2024 "Together We Will" Weekend and RFA Photos • 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 • SpringWorks CareConnections™ Patient Support Program • Introducing the DTRF Board of Directors • FDA Press Release: FDA Approves First Therapy for Rare Type of Non-Cancerous Tumors • VIDEO SHOWCASE: 2024 DTRF Patient Meeting Recordings on Vimeo • Medical and Scientific Advisory Boards • VIDEO: "Active Surveillance as a Desmoid Tumor Treatment" with Alessandro Gronchi, 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: 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 • Donate Tissue for Research - Desmoid Tumor Research Foundation • Diagnosis Codes & Desmoid Tumors • Dr. Jesse Boehm Discusses Importance of Rare Cancer Tissue Donation Through Pattern.org • Second Opinion Grants | Sarcoma Alliance • Newly Diagnosed? • Diagnosis & Treatment of Desmoid Tumors • DTRF Desmoid Tumor Patient Registry • Published Research Articles - Desmoid Tumor Research Foundation • Global Consensus Paper on the Treatment of Desmoid Tumors • FAQs