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, Donate Tissue for Research - Desmoid Tumor Research Foundation, DTRF Desmoid Tumor Patient Registry, Published Research Articles - Desmoid Tumor Research Foundation, Global Consensus Paper on the Treatment of Desmoid Tumors, FAQs.