In-person
2024 Patient Meeting
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 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.
Our 2024 Distinguished Presenters and Topics (More to follow)
“Latest edition of the global management consensus from ‘The Desmoid Tumor Working Group'.”
Bernd Kasper, MD, PhD
Professor
University of Heidelberg, Mannheim University Medical Center, Mannheim Cancer Center, Sarcoma Unit, Germany
“Reproductive/ Fertility Considerations: Important things to know.”
Laurie J. McKenzie, MD
Associate Professor
Oncofertility/Reproductive Endocrinology and Infertility/ Gynecologic Oncology and Reproductive Medicine, MD Anderson Cancer Center
“Learning in the basics: Desmoid Tumors 101.”
Thierry Alcindor, MD, MSc
Senior Physician
Sarcoma Center, Dana-Farber Cancer Institute, Brigham and Women's Hospital, Harvard Medical School
"An Update on the DTRF Patient Registry and Natural History Study- September 2024.”
Kelly Mercier, PhD
Principal Investigator
The DTRF Natural History Study, The Desmoid Tumor Research Foundation
“Active Surveillance: An accepted first line treatment in most desmoid tumor cases.”
Chiara Colombo, MD
Surgical Oncology
Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Italy
“Impact of Pain on Physical and Role Functioning in Adult Patients with Desmoid Tumors Treated with Nirogacestat/ Impact of nirogacestat on patient-reported outcomes in adults with desmoid tumor with a best overall response of stable disease: post hoc analysis from the DeFi study."
Ravin Ratan, MD
Medical oncologist
MD Anderson Cancer Center
“Cryoablation as a desmoid tumor treatment option.”
Andrea Vanzulli, MD
Diagnostic and Interventional Radiology
Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Italy
Megan Barrell
Desmoid Tumor Patient
PANEL: DTRF Multi-Disciplinary Mock Tumor Board
This session will include a collaborative conversation with a panel of sarcoma doctors from different specialities. Led by a moderator, the panel will present 2-3 desmoid tumor cases, bringing their own experiences to the discussion. Meeting attendees have the opportunity to see the benefit of a multi-disciplinary approach, and how it allows for thoughtful decision-making in patient care.
PANEL: Survivorship with a focus on AYA (Adolescents and Young Adults) - What happens next?
Achieving high-quality Survivorship Care is an important aspect of one’s desmoid tumor journey. This should include a survivorship care plan with oncologic history/summary, age-related desmoid tumor screenings and other screenings based on treatment, addressing long-term or late side effects, psychosocial needs, and financial toxicity related to prior treatment. Our conversation will aim to address these major domains and help close the gap; guiding patients with survivorship care.
“The short/long term side effects of current therapies in the pediatric population.”
Aaron Weiss, DO
Associate Professor
Department of Pediatrics, Division Chief, Pediatric Hematology-Oncology, Maine Medical Center
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 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.
The DTRF Patient Meeting is part of the DTRF Together We Will Weekend. In order to attend the Meeting, you need to register for the Weekend.
In-person
DTRF Patient Meeting
In order to attend the Meeting, you need to register for the Annual DTRF Together We Will Weekend. Be sure to register separately for the RFA Walk at the Houston Zoo!
Past Patient Meeting Presentations
Knowledge is power and critical to making informed treatment decisions. For your convenience, you can review the agendas, watch certain presentations, and read transcripts from our previous Patient Meetings.
*Information and guidance can change quickly. Always talk with your provider about research and treatment options to ensure you have the latest information.*
Past Patient Meeting Highlights
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Annual Weekend
Our annual DTRF Together We Will Weekend is a time for patients, family, and friends to connect with each other and participate in informative lectures and roundtables on desmoid tumors and race/walk in our Running for Answers 5K.
Past Patient Meeting Presentations
Watch presentations by desmoid tumor researchers and clinicians about research discoveries and current treatment options.
