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X-ORIGINAL-URL:https://dtrf.org
X-WR-CALDESC:Events for The Desmoid Tumor Research Foundation
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DTSTART;TZID=America/New_York:20260714T180000
DTEND;TZID=America/New_York:20260714T180000
DTSTAMP:20260714T143914Z
CREATED:20260630T171632Z
LAST-MODIFIED:20260714T143914Z
UID:10000052-1784052000-1784052000@dtrf.org
SUMMARY:From Research to Real Life: What the RINGSIDE Trial Results Mean for the Desmoid Community
DESCRIPTION:The presentation of the RINGSIDE trial data in May marked an important moment for the desmoid tumor community. Join the DTRF and Dr. Rashmi Chugh\, MD\, of University of Michigan Health\, for a timely discussion of the latest findings from the clinical study evaluating varegacestat\, an investigational gamma secretase inhibitor (GSI) being studied for the treatment of desmoid tumors. \nDuring this webinar\, Dr. Chugh will break down the RINGSIDE trial results in clear\, patient-friendly language\, helping attendees understand what the data showed\, how varegacestat works\, and what these findings may mean for the future of desmoid tumor treatment. Whether you are living with a desmoid tumor\, caring for a loved one\, or advocating within the community\, this session is designed to help you feel more informed and confident when discussing treatment options with your medical team. \nWe’ll reserve dedicated time for an in-depth Q&A\, giving attendees the opportunity to ask questions and hear directly from one of the leading experts in desmoid tumor care and research. \nRegister today! \n  \nPlease Note:  \nThis webinar is intended solely for educational and informational purposes. The information presented as a part of this webinar\, and any other material published in relation to this webinar\, are provided for general purposes only and not intended to replace medical advice. \nThe content of this webinar may not apply directly to specific circumstances and is not intended to be a substitute for professional medical advice\, diagnosis\, or treatment provided by your own medical provider or mental health provider.  \nThe DTRF does not endorse any treatments or studies.
URL:https://dtrf.org/event/from-research-to-real-life-what-the-ringside-trial-results-mean-for-the-desmoid-community/
CATEGORIES:Caregivers,Clinicians,Connection,Education,Patients,Research
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2026/06/chugh_webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251010T120000
DTEND;TZID=America/New_York:20251010T130000
DTSTAMP:20250901T133759Z
CREATED:20250901T133759Z
LAST-MODIFIED:20250901T133759Z
UID:10000040-1760097600-1760101200@dtrf.org
SUMMARY:DTRF Educational Webinar: Pregnancy and Desmoid Tumors
DESCRIPTION: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 delivery. \nThis will be a recorded webinar. Our expert panelists from Dana Farber Cancer Institute and The Brigham and Women’s Hospital will speak for roughly 45 minutes and the remaining 15 minutes will be for Q&A. Bring your lunch and your questions for this important discussion. \nRegister Here
URL:https://dtrf.org/event/dtrf-educational-webinar-pregnancy-and-desmoid-tumors/
CATEGORIES:Caregivers,Connection,Patients,Research
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2025/09/Pregnancy_webinar.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250912
DTEND;VALUE=DATE:20250914
DTSTAMP:20250908T173503Z
CREATED:20250220T161638Z
LAST-MODIFIED:20250908T173503Z
UID:10000030-1757635200-1757807999@dtrf.org
SUMMARY:2025 DTRF "Together We Will" Weekend
DESCRIPTION:Online registration is closed. In-person registration is still available at event check-in. \nJoin 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. \nThe annual DTRF Together We Will Weekend brings together patients\, caregivers\, researchers\, clinicians and industry professionals to connect\, collaborate\, and learn together. \nThank you to our Presenting Sponsor\, SpringWorks Therapeutics for supporting this annual event. \n  \n\n\nDon’t forget to sign-up for RFA Virtual too!\nStart your fundraising journey and follow the steps to claim your fundraising page today. Even though we won’t be hosting an in-person walk or run this year\, keep the RFA fun going by creating a walk\, run\, challenge or special event help us fund a cure for desmoid tumors! \nTake a look at our RFA Fundraising Toolkit to get ideas and help you along the way! We encourage you to start a walk\, run\, challenge or other special event in your community to gather friends and family to support desmoid tumor research\, education\, and advocacy. \n✨ Claim Your Fundraising Page \n 
URL:https://dtrf.org/event/2025-dtrf-together-we-will-weekend/
CATEGORIES:Awareness,Caregivers,Clinicians,Connection,Education,Patients,Research,Researchers
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2025/02/Zoom-Registration_Banner-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250528T123000
DTEND;TZID=America/New_York:20250528T133000
DTSTAMP:20250515T132632Z
CREATED:20250515T132501Z
LAST-MODIFIED:20250515T132632Z
UID:10000034-1748435400-1748439000@dtrf.org
SUMMARY:"Understanding the Classification of Desmoid Tumors"
DESCRIPTION: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. \nSpecial Guests include: \n✨️ Ravin Ratan\, MD\, Associate Professor\, Sarcoma\, MD Anderson Cancer Center⁠ ⁠ \n✨️ DeAnn Sorenson\, Administrator of The Desmoidian\, Desmoid Tumor Patient\, and Patient Advocate ⁠ ⁠ \n✨️ Alexander Ommaya\, DSc\, Desmoid Tumor Patient and Patient Advocate⁠ \nRegister Here \n\nAt the DTRF\, we want to “Spread the Word” far and wide that desmoid tumors are NOT benign.\nThe medical community\, research publications\, and other sources often use differing terms when describing desmoid tumors; one of those terms is the word “benign.” Over the years\, we’ve heard countless stories that this is confusing to patients as well as clinicians. This confusion can lead to misunderstandings about treatment and minimizes the potentially serious consequences of this rare disease. \nHow are desmoid tumors classified?\nDesmoid tumors (also known as aggressive fibromatosis\, desmoid fibromatosis\, and desmoid-type fibromatosis) do not metastasize. They are classified by the World Health Organization (WHO) as  “Intermediate (locally aggressive)” soft tissue tumors. They do not fall under “Benign” or “Malignant” classifications. \nLearn more about the World Health Organization’s (WHO) classification of desmoid tumors\, which is listed under Table II: Fibroblastic/Myofibroblastic Tumours. \nTo make a significant impact on behalf of the patient community\, we invite you to connect with the DTRF\, share our social content\, and spread the word that desmoid tumors are NOT benign. \nThank you for helping raise awareness and educate the community about the classification of desmoid tumors!
URL:https://dtrf.org/event/understanding-the-classification-of-desmoid-tumors/
CATEGORIES:Awareness,Caregivers,Clinicians,Connection,Education,Patients,Research,Researchers
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2025/05/STW_banner.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250512T180000
DTEND;TZID=America/New_York:20250512T190000
DTSTAMP:20250428T194708Z
CREATED:20250428T194509Z
LAST-MODIFIED:20250428T194708Z
UID:10000032-1747072800-1747076400@dtrf.org
SUMMARY:A New Clinical Trial for Desmoid Tumor Patients:  FOG-001
DESCRIPTION: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. \nJoin us to ask questions in real time! During this educational webinar\, Dr. Cote will discuss the challenges of developing drugs\, the basics of clinical trials\, and a new clinical trial for adults living with desmoid tumors. ⁠ \nSpecial thank you to Parabilis Medicines for sponsoring this event. \nLearn more about this webinar and register here.
URL:https://dtrf.org/event/a-new-clinical-trial-for-desmoid-tumor-patients-fog-001/
CATEGORIES:Caregivers,Connection,Patients,Research
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2025/04/FOG-001_event-banner.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241023T120000
DTEND;TZID=America/New_York:20241023T130000
DTSTAMP:20241008T173418Z
CREATED:20241008T173418Z
LAST-MODIFIED:20241008T173418Z
UID:10000024-1729684800-1729688400@dtrf.org
SUMMARY:Educational Webinar: "Cryoablation: What We Know and Don't Know"
DESCRIPTION: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. \nDuring 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. \nRegister Here \n  \n 
URL:https://dtrf.org/event/educational-webinar-cryoablation-what-we-know-and-dont-know/
CATEGORIES:Awareness,Connection,Education,Fundraising,Patients,Research
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2024/10/zoom-webinar-banner_1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240921T124500
DTEND;TZID=America/New_York:20240921T180000
DTSTAMP:20240530T115210Z
CREATED:20240425T161428Z
LAST-MODIFIED:20240530T115210Z
UID:10000013-1726922700-1726941600@dtrf.org
SUMMARY:2024 Annual Patient Meeting
DESCRIPTION:Founded in 2007\, the annual DTRF Patient Meeting is our signature patient support event of the DTRF Together We Will Weekend.\nIt 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. \nContent is geared toward topics of interest to our patient and caregiver community. Physicians are also strongly encouraged to attend this foundational event of the Weekend. This meeting will be recorded and available on our website in the weeks following the event. \nThe Patient Meeting is part of the DTRF Together We Will Weekend. In order to attend the Meeting\, you need to register for the Weekend.
URL:https://dtrf.org/event/2024-annual-patient-meeting/
LOCATION:Marriott\, 6580 Fannin Street\, Houston\, 77030\, United States
CATEGORIES:Awareness,Caregivers,Clinicians,Connection,Education,Fundraising,Patients,Research,Researchers,Walk
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2024/03/TWW_Event-and-Blog_Featured-Photos.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240920T110000
DTEND;TZID=America/Chicago:20240920T190000
DTSTAMP:20240530T115108Z
CREATED:20240425T161609Z
LAST-MODIFIED:20240530T115108Z
UID:10000014-1726830000-1726858800@dtrf.org
SUMMARY:2024 International Research Workshop
DESCRIPTION:The DTRF International Research Workshop features:\n\nScientific talks on current research and treatment\nA 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\nLive questions/answers and discussions related to the scientific talks\nGroup discussions focusing on gaps in desmoid tumor science and how best to address them through high-impact collaborative research\n\nThe DTRF International Research Workshop is part of the DTRF Together We Will Weekend. In order to attend the Workshop\, you need to register for the Weekend.
URL:https://dtrf.org/event/2024-international-research-workshop/
LOCATION:Marriott\, 6580 Fannin Street\, Houston\, 77030\, United States
CATEGORIES:Awareness,Caregivers,Clinicians,Connection,Education,Fundraising,Patients,Research,Researchers,Walk
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2024/03/TWW_Event-and-Blog_Featured-Photos.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240920
DTEND;VALUE=DATE:20240923
DTSTAMP:20240425T162406Z
CREATED:20240319T213442Z
LAST-MODIFIED:20240425T162406Z
UID:10000012-1726790400-1727049599@dtrf.org
SUMMARY:2024 Together We Will Weekend
DESCRIPTION:Together we will advance research\, empower our community with information\, foster connection\, and fundraise for a cure.\nWe are excited to announce the DTRF Together We Will Weekend and RFA Walk is moving to Houston\, TX on September 20-22\, 2024! \nEvents include the DTRF International Research Workshop for medical and industry professionals\, along with DTRF Patient Meeting for all attendees. \nThe annual DTRF Together We Will Weekend brings together patients\, caregivers\, researchers\, clinicians and industry professionals to connect\, collaborate\, and learn! \nEarly bird registration is officially OPEN! Use code TWWHOUSTON20 at checkout for 20% off registration. REGISTER here!
URL:https://dtrf.org/event/2024-together-we-will-weekend/
LOCATION:Marriott\, 6580 Fannin Street\, Houston\, 77030\, United States
CATEGORIES:Awareness,Caregivers,Clinicians,Connection,Education,Fundraising,Patients,Research,Researchers,Walk
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2024/03/TWW_Event-and-Blog_Featured-Photos.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230923T000000
DTEND;TZID=America/New_York:20230923T000000
DTSTAMP:20231106T175430Z
CREATED:20230915T204157Z
LAST-MODIFIED:20231106T175430Z
UID:10000002-1695427200-1695427200@dtrf.org
SUMMARY:DTRF Patient Meeting (DTRF Together We Will Weekend event)
DESCRIPTION: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 caregiver community. Physicians are also strongly encouraged to attend this foundational event of the Weekend.
URL:https://dtrf.org/event/dtrf-patient-meeting-dtrf-together-we-will-weekend-event/
LOCATION:Wyndham Philadelphia Historic District\, 400 Arch St\, Philadelphia\, PA\, 19106\, United States
CATEGORIES:Caregivers,Clinicians,Connection,Education,Patients,Research,Researchers
ATTACH;FMTTYPE=image/jpeg:https://dtrf.org/wp-content/uploads/2023/09/PatientMtg_GenImagery_5.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230922T000000
DTEND;TZID=America/New_York:20230924T000000
DTSTAMP:20230915T205720Z
CREATED:20230915T204155Z
LAST-MODIFIED:20230915T205720Z
UID:10000001-1695340800-1695513600@dtrf.org
SUMMARY:DTRF Together We Will Weekend
DESCRIPTION:DTRF Together We Will Weekend convenes patients\, caregivers\, researchers\, clinicians and industry professionals to connect\, collaborate and learn. Together We Will advance research\, empower ourselves with information\, and fundraise for a cure.
URL:https://dtrf.org/event/dtrf-together-we-will-weekend/
LOCATION:Wyndham Philadelphia Historic District\, 400 Arch St\, Philadelphia\, PA\, 19106\, United States
CATEGORIES:Caregivers,Clinicians,Connection,Education,Patients,Research,Researchers
ATTACH;FMTTYPE=image/jpeg:https://dtrf.org/wp-content/uploads/2023/09/EventsCal_TWW-Weekend.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230922T000000
DTEND;TZID=America/New_York:20230922T000000
DTSTAMP:20231106T175608Z
CREATED:20230915T204158Z
LAST-MODIFIED:20231106T175608Z
UID:10000003-1695340800-1695340800@dtrf.org
SUMMARY:DTRF Int'l Research Workshop (DTRF Together We Will Weekend event)
DESCRIPTION:Designed for researchers and medical professionals\, the annual DTRF International Desmoid Tumor Research Workshop is a critically important\, collaborative event bringing together some of the brightest minds in the field of desmoid tumors from a variety of disciplines. It presents the latest information on desmoid treatments and research\, and facilitates new collaborations to move the science forward. The Workshop also helps us identify research priorities for the coming years. We are sincerely grateful to our attendees who play a key role in advancing the field.
URL:https://dtrf.org/event/dtrf-intl-research-workshop-dtrf-together-we-will-weekend-event/
LOCATION:Wyndham Philadelphia Historic District\, 400 Arch St\, Philadelphia\, PA\, 19106\, United States
CATEGORIES:Clinicians,Connection,Education,Research,Researchers
ATTACH;FMTTYPE=image/jpeg:https://dtrf.org/wp-content/uploads/2023/09/DTRF-RW-2018-7.jpg
END:VEVENT
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