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  • Desmoid Tumor Awareness Month

    Featured

    Every September, the DTRF and the international patient and caregiver community celebrate Desmoid Tumor Awareness Month.

  • DTRF Together We Will Weekend

    Featured
    Wyndham Philadelphia Historic District 400 Arch St, Philadelphia, PA, United States

    This weekend brings together patients, caregivers, researchers, clinicians and industry professionals to connect, collaborate, and learn. Weekend events include DTRF Patient Meeting, DTRF Int’l Research Workshop, RFA 5K & Fun Run, and DTRF Community Networking Event.

  • DTRF Patient Meeting (DTRF Together We Will Weekend event)

    Wyndham Philadelphia Historic District 400 Arch St, Philadelphia, PA, United States

    Founded in 2007, the annual DTRF Patient Meeting is our signature patient support event of the DTRF Together We Will Weekend. The meeting includes educational presentations by clinicians and researchers, with questions from the audience, as well as a talk by a desmoid patient. Content is geared toward topics of interest to our patient and […]

  • DTRF Community Networking Event (DTRF Together We Will Weekend event)

    Wyndham Philadelphia Historic District 400 Arch St, Philadelphia, PA, United States

    Community connections can be transformative and are essential to the patient and caregiver journey. Our Community Networking Event is a wonderful opportunity to have one-on-one, real-time conversations with fellow patients and caregivers. The event is structured to provide a natural way to get to know attendees and share experiences by connecting in small groups in […]

  • DTRF “Speed Desmoidian-ing” Virtual Networking Event for Adolescents & Young Adults

    Join the DTRF for the second night of the two-part event: "Times Are A-Changin': Heading into Young Adulthood with a Desmoid Tumor." Tune in for a special "Speed Desmoidian-ing" virtual networking event just for young adults with desmoid tumors facilitated by two of their peers. Includes: 1-on-1 Breakout Rooms and Group Discussion to connect with […]

  • WMK Classic: Lacrosse Tournament Fundraiser

    1st Annual WMK Classic (presented by WYL) Charity 3-on-3 Small Ball Lacrosse Tournament benefitting the DTRF in Winchester, Massachusetts. Contact Chris Froeb for more information: chrisfroeb@gmail.com

  • Athina’s Ride

    Penticton B.C.

    Athina's Ride is a cycling event that starts with training rides in the spring and culminates on July 13/14th weekend. You can either complete the ride on your own, with family & friends or join our ride led by Athina Merckx on the Saturday July 13th in Penticton, British Columbia. Come join Athina and support […]

  • Desmoid Tumor Awareness Month: Webinar with Dr. Dale Shepard

    On Thursday, September 5th at 4pm ET, join us for a webinar featuring Dr. Dale Shepard from the Cleveland Clinic. He will explain how impactful the testing of biomarkers is in the diagnosis and treatment of desmoid tumors. He will also touch on genetic testing in relation to CTNNB1 mutations. Register Here Dale R. Shepard […]

  • Desmoid Tumor Awareness Month: Facebook Live with Megan Barrell

    Celebrate Desmoid Tumor Awareness Month with us! On Thursday, September 11th at 3pm ET, join us for a Facebook Live featuring Megan Barrell, Desmoid Tumor Patient Advocate. The conversation will focus on Megan's lived experience and patient journey as a young adult with a desmoid tumor.  

  • Golf For A Cure

    Zeeland, MI

    $100 - Per Player includes 18 holes w/cart, reception, drink tickets, raffles All proceeds go to support research for a cure through the Desmoid Tumor Research Foundation Location: Crestview Golf Course Learn more by downloading the event guide here!

  • 2024 Together We Will Weekend

    Marriott 6580 Fannin Street, Houston, United States

    Together we will advance research, empower our community with information, foster connection, and fundraise for a cure. We are excited to announce the DTRF Together We Will Weekend and RFA Walk is moving to Houston, TX on September 20-22, 2024! Events include the DTRF International Research Workshop for medical and industry professionals, along with DTRF […]

  • 2024 International Research Workshop

    Marriott 6580 Fannin Street, Houston, United States

    The DTRF International Research Workshop features: Scientific talks on current research and treatment A forum to share research findings, develop new collaborations, bring new scientists into the desmoid tumor research field, and discuss innovations that will lead to new treatments Live questions/answers and discussions related to the scientific talks Group discussions focusing on gaps in […]

  • 2024 Annual Patient Meeting

    Marriott 6580 Fannin Street, Houston, United States

    Founded in 2007, the annual DTRF Patient Meeting is our signature patient support event of the DTRF Together We Will Weekend. It always takes place on Saturday, the day before our annual RFA Walk. The meeting includes educational presentations by clinicians and researchers, with questions from the audience, as well as a talk by a desmoid patient. Content is geared […]

  • 2024 RFA Walk

    Houston Zoo 6200 Hermann Park Drive, Houston, TX, United States

    The 2024 RFA Walk offers something for everyone; build a team, participate as an individual, create awareness, and help fundraise for a cure! Running for Answers (RFA), founded in Philadelphia by desmoid tumor patient Sera Snyder in 2009, is the annual DTRF signature fundraising event. This year, the desmoid tumor patient community and supporters will come […]

  • Swing for a Cure – St. Louis

    The Ortwerth family invites you to the 6th Annual Swing For A Cure - St. Louis to raise funds for desmoid tumor research! Register HERE for this special event.

  • Desmoid Tumor Awareness Month: Facebook Live with Amanda MacKinnon

    Celebrate Desmoid Tumor Awareness Month with us! On Thursday, September 25th at 3pm ET, join us for a Facebook Live featuring Amanda MacKinnon, caregiver of a desmoid tumor patient. The conversation will focus on Amanda's caregiver journey.

  • Educational Webinar: “Cryoablation: What We Know and Don’t Know”

    Register today for the upcoming educational webinar 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 […]

  • DTRF Lunch N’ Learn: “Reproductive/fertility considerations for desmoid tumor patients”

    During this virtual event, Dr. Laurie McKenzie will share how you can obtain a fertility assessment before and after treatment for desmoid tumors. She will share fertility preservation options available for both men and women. Also, she'll provide some additional reliable resources in terms of fertility preservation options and reproductive considerations. This will be a […]

  • Navigating Your Desmoid Tumor Diagnosis: A 1/2 day patient education and networking opportunity

    Have questions about your desmoid tumor diagnosis?  Want to learn from sarcoma specialists who work with desmoid tumors? Looking to come face-to-face with other patients and caregivers who share your journey? Join us on February 8th at Pennsylvania Hospital's Zubrow Auditorium in Center City Philadelphia for an opportunity to connect with and learn from other desmoid tumor […]

  • Facebook Live with Desmoid Tumor Patient: Amy Beitz

    In honor of Rare Disease Day this year, join us LIVE on Facebook on February 27th, at 6 PM ET for a conversation with desmoid tumor patient, Amy Beitz! You don't want to miss Amy share her desmoid tumor story. To join the event and ask questions, visit our Facebook Live Event link in our […]

  • Ask the Radiologist: A Q+A about Imaging

    The DTRF is excited to try new and different ways of sharing knowledge with the desmoid patient community. Join us for “Ask the Radiologist”, a unique opportunity to virtually - face-to-face - speak with a leading radiologist about your desmoid tumor questions on Monday, March 24th at 6PM ET. This conversation will be an *unrecorded* […]

  • 2025 RFA Virtual

    Running for Answers (RFA) is going VIRTUAL! Even though there won't be an in-person run or walk this year, help the DTRF carry on the RFA tradition and make a bigger impact by launching a virtual fundraiser today! Running for Answers was founded in Philadelphia by desmoid tumor patient Sera Snyder in 2009 and quickly became DTRF's annual fundraising […]

  • A New Clinical Trial for Desmoid Tumor Patients:  FOG-001

    Register today for the upcoming webinar on May 12th @ 6PM ET entitled, “A New Clinical Trial for Desmoid Tumor Patients:  FOG-001." This webinar is hosted by the DTRF with special guest Gregory Cote, MD, PhD, Physician at Massachusetts General Hospital and Associate Professor at Harvard Medical School. Join us to ask questions in real […]

  • “Understanding the Classification of Desmoid Tumors”

    Join us for a conversation about the classification and language used to describe desmoid tumors. We'll hear about the challenges in communication faced by both patients and doctors, and what we - and you! - can do moving forward to help alleviate misunderstandings about this rare disease. Special Guests include: ✨️ Ravin Ratan, MD, Associate […]

  • Lakeland Trails 100km Ultra

    Support Nick Plant on his DTRF fundraising journey. A Note from Nick:  This year, I’ve decided to take on the Lakeland Trails 100km Ultra run in support of the Desmoid Tumour Research Foundation (DTRF). This charity does incredible work, they aggressively fund desmoid tumor research, accelerate the development of improved therapies, drive collaborations among clinicians and researchers worldwide, and […]

  • Golf For A Cure

    $100 - Per Player includes 18 holes with golf cart, reception, drink tickets & raffles All proceeds of this event go to support research for a cure through the Desmoid Tumor Research Foundation! Location: Crestview Golf Course - Zeeland, Michigan Learn more by downloading the event guide here!

  • 2025 DTRF “Together We Will” Weekend

    Online registration is closed. In-person registration is still available at event check-in. Join us for the 2025 DTRF Together We Will Weekend in Chicago, IL on September 12-13 (Fri/Sat)! Featured events include the DTRF International Research Workshop for medical and industry professionals, along with the DTRF Annual Patient Meeting for all attendees. The annual DTRF Together We Will Weekend brings together patients, caregivers, researchers, clinicians and […]

  • Swing for a Cure – St. Louis

    The Ortwerth family invites you to the 7th Annual Swing For A Cure - St. Louis to raise funds for desmoid tumor research! Register HERE for this special event.

  • DTRF Educational Webinar: Pregnancy and Desmoid Tumors

    The understanding of pregnancy-associated desmoids has increased significantly over the past several years. In this virtual educational webinar, the panel will discuss the literature and their approach to desmoids. Management of desmoids in the setting of pregnancy should be tailored to the patient and specific clinical situation and typically results in a healthy pregnancy and […]

  • Rock For A Cure

    TRIBE is organizing the first annual “Rock for a Cure” concert featuring Batterhead and Tom Fills for an amazing charity near and dear to our hearts - Desmoid Tumor Research Foundation. DTRF is funding grants for groundbreaking research into why desmoid tumors spontaneously regress--without any treatment--at a rate nearly 10 times as frequently as with […]

  • Navigating Your Desmoid Tumor Diagnosis: A 1/2 day patient education and networking opportunity

    Reserve your spot at our upcoming patient education event in collaboration with Stanford School of Medicine to connect with and learn from other desmoid tumor patients and clinicians. A variety of educational talks and a networking opportunity will be included in this half day patient-centered event. Event Schedule:  Registration: 8-8:30AM Educational Meeting: 8:30AM-12PM Lunch & Networking: 12-1PM […]

  • Facebook/Instagram Live with Desmoid Warrior: Morgan B.

    Join us LIVE on Facebook and Instagram in honor of Rare Disease Day! On Thursday, February 26th at 5 PM ET, Morgan will share her personal journey living with a desmoid tumor. She’ll discuss the challenges, uncertainties, and resilience that so many in the desmoid community know firsthand. This live event is an opportunity to […]

  • Spread the Word: Educational Webinar

    Help us Spread the Word by joining the Desmoid Tumor Research Foundation on March 24th from 6-7 PM ET for an educational webinar exploring desmoid tumor diagnosis, pathology classification, and the real-world impact these distinctions have on treatment decisions and patient wellbeing. This multidisciplinary discussion will examine how desmoid tumors are identified and categorized, what […]