The Desmoid Tumor Research Foundation

Patients & Caregivers

Patient Meeting

We are working hard on preparing next year's Patient Meeting. Please check back soon for more details.
We are working hard on preparing next year's Patient Meeting. Please check back soon for more details.

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!

Saturday, Sept. 21, 2024

Houston Marriott Medical Center/Museum District

6580 Fannin Street
Houston, Texas 77030

Register Now

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.

Watch Past Presentations

*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

At the DTRF's 2019 Patient Meeting, Co-founder Jeanne Whiting took a moment to welcome roughly 200 attendees – patients, caregivers, physicians and researchers.
Mannheim University's medical oncologist Dr. Bernd Kasper addresses Patient Meeting attendees including MIT researcher, Dr. Jesse Boehm, and UK medical oncologist, Dr. Palma Dileo. Board Members Marlene Portnoy and Maria Crocitto are in attendance as well.
University of Colorado medical oncologist Dr. Breelyn Wilky connects with an attendee after her Patient Meeting presentation.
MD Anderson Pathologist Dr. Alex Lazar empowers attendees by teaching them about the pathology of desmoid tumors.
A patient looks at a scientific poster exhibiting DTRF Natural History Study (NHS) data from a study on misdiagnosis, quality of life and tumor location. By participating in the DTRF Patient Registry and NHS, patients are powering research.
The DTRF Virtual Tumor Board meets quarterly. To demonstrate how a tumor board works,, Maine Medical Center pediatric oncologist and tumor board moderator, Dr. Aaron Weiss, moderates a mock tumor board with MD Anderson's medical oncologist Dr. Robert Benjamin and pathologist Dr. Alex Lazar; Memorial Sloan Kettering's surgical oncologist Dr. Aimee Crago and radiologist Dr. Robert Lefkowitz; UK University Hospitals' medical oncologist Dr. Palma Dileo, and Rabin Medical Center's interventional radiologist Dr. Eldad Elnakave at our Patient Meeting
Hot off the press! In 2019, DTRF was able to share the first version of the international global consensus paper on desmoid tumor treatment with Patient Meeting attendees.
Patient advocate Dakota Fisher-Vance leads the community networking speed session where patients have 2-3 minutes to connect on a specific question... ready, set, go!
The desmoid tumor patient experience is vast and varied. Patient Gloria V. shares her stats at the 2017 DTRF Together We Will Weekend.
Nothing is a substitute for being in person. DTRF Co-Founder Jeanne Whiting hugs a Patient Meeting attendee.

Attendee testimonials

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“Every year I attend the Patient Meeting, I learn something new and something that will absolutely impact my health going forward.”

Amanda H.

Massachusetts, US

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“Great information. The ability to ask questions of the presenters via the Q&A was also great. Thank you for all of your efforts putting this together.”

Anonymous

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“DTRF gave me the chance to connect with the top doctors studying this disease.”

Susan H.

New Jersey, US

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“Made me feel less alone and gave me great information to share with my doctors here in Canada!”

Julie M.

Calgary, Canada

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“I attended my first Patient Meeting virtually, but I still felt like part of the community and so loved. I still think of it as an amazing event. I’m very grateful.”

Kate

Michigan

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“Perfect amount of speakers. Perfect amount of time. I really liked the way the question and answer periods went this year.”

Anonymous

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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.


Learn More

Past Patient Meeting Presentations

Watch presentations by desmoid tumor researchers and clinicians about research discoveries and current treatment options.


Watch Now