The Desmoid Tumor Research Foundation (DTRF)’s Post

📣 More than two years of advocacy by the Desmoid Tumor Research Foundation (DTRF) has led to the approval by the Center for Disease Control (CDC) of new ICD-10 codes specific to the diagnosis of desmoid tumor, which also identify tumor location. The new codes went into effect October 1, 2023. Learn more about the new ICD-10 codes and more on DTRF.org: 🗞 Press Release: https://lnkd.in/e_A99V77 🔗 https://lnkd.in/gV2_MwD6 Examine the implications of the new ICD-10-CM codes for #DesmoidTumors & get insights from Mrinal Gounder, MD, & Linda Holtzman, MHA, RHIA, CCS, CCS-P, CPC, COC, on how to integrate them into clinical practice and research in this CME course. Produced with @PeerView: https://bit.ly/47yXLug #MedEd #DTRF #desmoid #desmoidtumors #desmoidawareness

When surgeries are appropriate, fresh desmoid tissue samples can be collected for research. Your fresh desmoid tumor tissue sample could hold the key to unlocking new discoveries about what drives desmoid tumors. With your prior online consent through Pattern.org, a small amount of excess tissue from your surgery will be collected and sent to a key research partner such as the Boehm Lab at the Koch Institute of MIT. 🔗 Learn more on our website: https://lnkd.in/gbWu7fkf #desmoidtumorresearch #research #DTRF #DesmoidTumorResearchFoundation #desmoid #desmoidtumor #desmoidawareness #aggressivefibromatosis #Desmoidian #desmoidresearch #FAP #familialadenomatouspolyposis #OrphanDisease #raredisease #sarcoma #sarcomaresearch #sarcomaawareness #oncology #hope #tissuedonation

💻 Register today for the upcoming educational webinar on October 23rd @ 12PM ET entitled, “Cryoablation: What We Do and Don't Know." This webinar is hosted by the DTRF with special guests Bernd Kasper, MD, PhD, Professor, University of Heidelberg, Mannheim University Medical Center in Germany and Jean-Emmanuel Kurtz, MD, PhD, Professor of Medical Oncology from Strasbourg University- Hôpitaux Universitaires de Strasbourg in France. During this webinar, Dr. Kurtz will talk about how cryoablation is performed and how it works. He'll also cover what we do and don't know about this targeted treatment option for desmoid tumors. Dr. Kasper will broaden the scope by touching on systemic therapeutic treatments. After these talks, we'll open up for questions from the community. 🔗 Learn more about this webinar and register here: https://lnkd.in/eYqdDJxH #desmoidtumorawareness #DTRF #DesmoidTumorResearchFoundation #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #FAP #OrphanDisease #raredisease

🦄 Make a difference TODAY. Don't forget that RFA is not done yet! Registration and all virtual fundraising pages are open until October 31st. ⭐ Visit https://bit.ly/2024RFAwalk to register for FREE, launch your fundraising page, and get in on the fun, while supporting desmoid tumor research! #RFA #RFA24 #runforanswers #desmoidawareness #fundraising #donate #desmoidresearch

🆕 25+ new articles from June, July, and August have been posted on the Published Research page of our website. Thank you to @mgkumar82 - Maneesh Kumar, MD, PhD, for helping us collect these important articles. #desmoid 🔗 https://lnkd.in/eYyrjjvk

Watch our free, on-demand, #CME program with @PlatformQHealth. Review data‐based strategies to achieve an earlier diagnosis for patients with #DesmoidTumors: https://bit.ly/4a1JMi1 For additional CME programs, visit our site at https://lnkd.in/ekHRcmnC. #MedicalEducation #MedEd #CMEprogram #HCPEngagement #Oncology #EarlyDetection #HealthEducation #Oncologists #EarlyDiagnosis #DTRF

💻 Want the latest in #desmoid tumor-related news? Sign-up for email updates from the DTRF to ensure you’re in the know on desmoid tumor research, clinical trial announcements, community news, virtual networking events, patient resources, and more. Subscribe today to receive the bimonthly DTRF newsletter: https://lnkd.in/gYxmRXgY. #Desmoid #DesmoidTumors #DesmoidTumor #fibromatosis #aggressivefibromatosis #DTRF #DesmoidTumorResearchFoundation #Desmoidian #desmoidresearch #FAP #familialadenomatouspolyposis #OrphanDisease #raredisease #sarcoma #sarcomaresearch #sarcomaawareness #oncology #research #hope

The 2024 DTRF Int'l Desmoid Tumor Research Workshop was held on 9/20 in Houston as part of the "Together We Will" Weekend. A global group of clinicians, researchers, and industry professionals attended this impactful workshop that featured presentations on the latest desmoid tumor science. Our deepest gratitude is extended to all who traveled from near and far to be with us, with special thanks to our distinguished presenters. Recordings of some presentations will be posted on our website in the coming weeks. If you are a clinician or researcher, please sign up for our emails (https://lnkd.in/gmAbfErg) and watch our socials for notifications. #togetherwewillweekend2024 #togetherwewillweekend #DTRF #Desmoidian #desmoidtumorresearchfoundation #desmoidtumor #desmoidawareness #desmoidresearch

🧩 We can’t complete the puzzle without YOUR piece! You could help reveal a connection never drawn about desmoid tumors, or add more nuance to something we thought we already knew by sharing your unique story with the DTRF Patient Registry at DTRF.iamrare.org. Part of a cooperative project with the FDA and NORD, the DTRF Patient Registry has been established to study the natural history of desmoid tumors. The more patients participating in the online study, the more can be learned. If you have ever had a desmoid tumor, you can participate. If you are the guardian or caregiver of anyone who has ever had a desmoid tumor, you can register and complete surveys on their behalf. 🔗 To start, simply set up an account at dtrf.iamrare.org and begin completing the online surveys. We hope that you’ll complete all surveys available to you, answering as many questions as possible, but you don’t have to do it all at once! We encourage you to complete what you can, save your progress, take a break, and return to the surveys again later. You’ll be able to see how your experience compares with others while completing the surveys. After you complete each one, you’ll be able to view aggregate data. Your story is a part of the puzzle. As the registry sponsor, DTRF employs best practices to protect data privacy and confidentiality. Participation in the DTRF Patient Registry is free and voluntary, and participants may withdraw at any time. Learn more at https://lnkd.in/eyDdpPMM and email us at [email protected] with any questions. Thank you for your actively taking part in your research!

💜 Throughout the month of September, hundreds of our community members and partner organizations shared desmoid tumor patients' stories, amplified desmoid tumor facts, and attended virtual events to spread awareness. ✨ Although the month is coming to a close today, we want to keep this momentum going in the months and years to come. Keep learning, keep sharing, and keep using your voice to raise awareness of desmoid tumors worldwide. On behalf of the entire DTRF team and a worldwide patient community, we thank you for supporting Desmoid Tumor Awareness Month! 📣 Don't forget that our annual RFA Walk fundraiser continues until October 31st. It's not too late to register and launch your fundraising page to help fund a cure for desmoid tumors. Register here to get started today: https://bit.ly/2024RFAwalk #DTAM #desmoidtumorawareness #togetherwewillweekend2024 #DTRF #DesmoidTumorResearchFoundation #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #familialadenomatouspolyposis #OrphanDisease #raredisease #RFA24