Registration is OPEN!
Our annual event brings together patients, caregivers, clinicians, researchers, and industry professionals for a Weekend of connection, learning, and shared understanding with the desmoid tumor community.
Whether you are newly diagnosed, have been navigating your desmoid journey for years, are supporting a loved one, or working in the field as a clinician or researcher, YOU are welcome here.
2026 DTRF Together We Will Weekend
In-Person
September
25-27, 2026
Philadelphia, PA
Registration Information
All Weekend events will take place at the following hotel: Sheraton Philadelphia University City Hotel
Scroll down to view our Weekend schedule. Use code TWWPHILLY20 by May 31st to receive 20% off your registration.
Thank you to our Presenting Sponsor:
Book Your Hotel
Please book your hotel accommodations in the DTRF room block as soon as possible: Sheraton Philadelphia University City Hotel
Hotel Address: 3549 Chestnut Street, Philadelphia, PA, 19104
2026 DTRF Together We Will Weekend Event Schedule
The following times are Eastern Time (ET). Times may vary slightly based on changes to the event schedule. All attendees will be notified of changes in advance.
⭐ These sessions are designed for clinicians, researchers, and industry professionals.
10:00 AM – 11:00 AM | International Desmoid Tumor Research Workshop Check-in/Registration
Check-in at our event registration table to receive all of your Weekend materials.
11:00 AM – 5:00 PM | Int’l Desmoid Tumor Research Workshop
A collaborative meeting of leading experts across disciplines to share the latest in desmoid tumor research and treatment, foster new collaborations, and help shape future research priorities. Lunch provided.
Note: To support open and candid discussion of clinical topics and emerging research, this session is intended for clinicians, researchers, and industry professionals. Please see additional sessions throughout the Weekend agenda that are open to all attendees.
Our list of distinguished presenters will be updated here.
⭐️ These sessions are designed for patients and caregivers.
2:30 PM – 3:30 PM | Patient & Caregiver Check-in/Registration
Check-in at our event registration table to receive all of your Weekend materials.
3:30 – 5:00 PM | Community & Connection Session
Kick off the Weekend with educator, advocate, and fellow desmoid patient, Christina Kosyla, in a new session centered on patients and caregivers. Through guided conversations, small group discussions, and interactive activities, you’ll have space to share, listen, and connect with fellow attendees who understand. This is an opportunity to meet other patients and caregivers and begin building connections to carry with you throughout the Weekend.
⭐️ This session is designed for all Weekend attendees.
5:00 – 6:30 PM | Welcome Reception
Join us in a welcoming setting designed for connection across the entire community. All attendees are invited to participate in small-group conversations hosted by patient-clinician dyads or simply connect informally during the reception. Light appetizers and refreshments provided.
Tomorrow starts bright and early. Be sure to join us for the Meet the Clinicians & Researchers Breakfast from 7:30 – 9:00AM.
⭐️ This session is designed for all Weekend attendees.
7:30 – 9:00 AM | Meet the Clinicians & Researchers Breakfast
An informal opportunity to ask questions, explore topics related to your desmoid tumor(s) and connect with clinicians, researchers, and other attendees. Breakfast provided.
Note: These conversations are for informational purposes only and do not replace individualized medical advice.
⭐️ This session is designed for patients and caregivers.
9:30 – 10:45 AM | Mental Health in the Desmoid Tumor Journey
New this year and inspired feedback from past attendees, we’re bringing a dedicated focus on mental health to the Annual Patient Meeting.
During this session, led by the team of The Desmoid Project, Co-Founders Dana Lawson, CTP, BCPA and Ashley Williams, LCSW, CCTP-II, patients and caregivers will explore the emotional and psychological impact of living with a desmoid tumor in a thoughtful, supportive setting. This session offers space for reflection, connection, and practical coping strategies.
BREAK | 15 minutes
⭐️ This session is designed for all Weekend attendees.
11:00 AM – 4:30 PM | Annual Patient Meeting
The DTRF’s signature event featuring educational sessions from leading clinicians, researchers, and community experts. Topics are designed for patients and caregivers, with valuable insights for all attendees. Lunch and snacks provided.
Our list of distinguished presenters will be updated here.
All attendees are invited to join us in the DTRF Wellness Commons tomorrow from 9:00 – 11:00AM.
⭐️ This session is designed for all Weekend attendees.
9:00 AM – 11:00 AM | DTRF Wellness Commons
Close out the DTRF’s Together We Will Weekend with connection, movement, and purpose at our Wellness Commons. Choose from three guided activities: a group walk, yoga session, or hula class. Each activity is designed with accessibility considerations and modifications. Light breakfast provided.
More details about this session coming soon!
Table of Contents
The DTRF Together We Will Weekend Core Events
DTRF Annual Patient Meeting
The DTRF’s signature event featuring educational sessions from leading clinicians, researchers, and community experts. Topics are designed for patients and caregivers, with valuable insights for all attendees. This meeting will be recorded and available on our website in the weeks following the event.
⭐️ This session is designed for all Weekend attendees.
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 International Research Workshop
A collaborative meeting of leading experts across disciplines to share the latest in desmoid tumor research and treatment, foster new collaborations, and help shape future research priorities. This workshop will be recorded and available on our website in the weeks following the event. Virtual registration option available.
⭐ These workshop is designed for clinicians, researchers, and industry professionals.
Note: To support open and candid discussion of clinical topics and emerging research, this session is intended for clinicians, researchers, and industry professionals. Please see additional sessions throughout the Weekend agenda that are open to all attendees.
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 Annual Patient Meeting is a time to hear from clinicians, researchers, and desmoid patients and caregivers during our annual DTRF Together We Will Weekend.
