Registration is OPEN.
Join us for the DTRF Together We Will Weekend in Chicago, IL on September 12-13, 2025.
Thank you to our Presenting Sponsor, SpringWorks Therapeutics for supporting this annual event.
Scroll down to register. Stay tuned for our event schedule and list of distinguished presenters coming soon.
The annual DTRF Together We Will Weekend brings together patients, caregivers, researchers, clinicians and industry professionals to connect, collaborate, and learn. Together we will advance research, empower our community with information, foster connection, and fundraise for a cure.
2025 DTRF Together We Will Weekend
In Person
September
12-13, 2025
Chicago, IL
DTRF Together We Will Weekend
Friday & Saturday, Sept. 12-13
250 East Superior Street, Chicago, IL 60611
Don’t forget to use the promo code TWWCHICAGO20 to get 20% off registration by June 1st.
DTRF RFA Virtual
This year Running for Answers (RFA) is now a completely virtual fundraiser to rally donors and supporters to raise vital funds for desmoid tumor research, education, and advocacy from anywhere around the world!
Book Your Hotel
The DTRF Together We Will Weekend conference events will take place at the Northwestern Medicine: Prentice Women’s Hospital.
To help with accommodations located near the event venue, the DTRF has a reserved room blook at the following hotel: Hampton Inn Chicago Downtown Magnificent Mile – 160 E Huron St, Chicago, IL – 60611
The DTRF Together We Will Weekend Core Events
DTRF Annual Patient Meeting
Founded in 2007, the DTRF Annual Patient Meeting is our signature patient support event. 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, and physicians are also 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.
Running for Answer (RFA) Virtual
RFA Virtual, founded as the Running for Answers 5K by desmoid tumor patient Sera Snyder in 2009, is our annual signature fundraising event. The desmoid tumor community and supporters gather in their own communities to walk, run, and roll as a unified force against desmoid tumors. By participating in RFA, anyone can build a virtual team, create an event or challenge, and help fundraise for a cure!
DTRF Community Networking Event
We’ve heard many times from patients and caregivers that attending our annual events have helped them feel that they’re not battling this disease alone. Our in-person networking event is a wonderful opportunity to have one-on-one, real-time conversations with fellow patients and caregivers.
DTRF Int’l Research Workshop
Designed for researchers and medical professionals, this critically important, collaborative event is a meeting of some of the brightest minds in desmoid tumor research from a variety of disciplines. The Research Workshop presents the latest information on desmoid treatments and research, and facilitates new collaborations to move the science forward. It also helps the DTRF identify research priorities for the coming years. Medical students interested in studying desmoid science are welcome to attend as well.
2025 DTRF Together We Will Weekend Event Schedule
All events take place at Northwestern Medicine: Prentice Women’s Hospital in Chicago, IL.
11:00 am – 5:00 pm:
DTRF Int’l Research Workshop for Clinicians, Researchers and Industry Professionals
This is the only Weekend event that will be both in-person and virtual. It is exclusively for researchers and medical professionals, but medical students interested in studying desmoid science are welcome to attend as well.
5:00 pm – 6:30 pm:
Welcome Reception & Weekend Kickoff for All Weekend Attendees
This evening event will allow the DTRF to formally welcome patients, their family members, clinicians, researchers, and industry professionals to Houston. Let’s kick off the weekend with connection and comradery as we celebrate being together once again! Enjoy drinks and appetizers as you settle in for the DTRF Together We Will Weekend.
8:00 am- 9:30 am:
“Meet the Doctors and Researchers” Networking Breakfast for All Weekend Attendees
Over coffee and an informal breakfast, researchers and clinicians will answer questions about treatment options, tumor locations, and research. Patients will have the opportunity to meet each other and share experiences. Each roundtable will cover a different topic.
Please note: Each desmoid tumor case is different. These conversations are not intended as medical advice for any individual problem or as a diagnosis, treatment plan, or recommendation for a particular course of action and should not be used as a substitute for professional medical advice and services.
10:00 am- 11:00 am:
Speed Desmoidian-ing Community Networking Event for Patients & Caregivers
This networking event will allow patients and caregivers to connect one-on-one during brief chats.
10:00 am- 11:30 am:
DTRF Scientific and Medical Advisory Board Meeting (Closed meeting for Foundation Advisors only.)
Lunch on your own
12:45 pm – 6:00 pm:
DTRF Patient Meeting for All Weekend Attendees
Founded in 2007, the Annual DTRF Patient Meeting is the annual signature patient support event. Content is geared toward our patient and caregiver community, but all are encouraged to attend this foundational event of the weekend.
Dinner on your own
Table of Contents
Together We Will
Learn.
Together We Will
Collaborate.
Together We Will
Fund a Cure.
Continue Exploring
The Annual DTRF International Desmoid Tumor Research Workshop
Join us in our mission to support our patient community and fund research.
DTRF Patient Meeting
Our Patient Meeting is a time to hear from clinicians, researchers, and desmoid patients and caregivers during our annual DTRF Together We Will Weekend.
