DTRF "together we will" weekend


The Desmoid Tumor Research Foundation is pleased to announce that, for the first time since 2019, we will be convening in-person in Philadelphia!

We invite our global community of patients, caregivers, clinicians and researchers to join us for the annual DTRF Together We Will Weekend and RFA 5K & Fun Run from September 22nd- 24th. 

Join our community of patients and doctors for exciting events designed to inspire learning and connection, and to foster collaboration toward better treatments and a cure for desmoid tumors. Weekend events include the DTRF Int’l Research Workshop for clinicians and researchers, along with the DTRF Patient Meeting for all attendees.

Online registrations for the DTRF Together We Will Weekend and RFA 5K & Fun Run are open NOW but will close on Thursday, Sept 21st at 12pm ET.

Check out the agenda below and mark your calendars. We look forward to seeing you in Philadelphia!

Please contact us at info@dtrf.org with any questions.



DTRF Together We Will Weekend

at The Wyndham Philadelphia- Historic District  

400 Arch St, Philadelphia, PA 

Event Schedule


Friday, September 22nd


11:00 am- 5 pm:  DTRF Int’l Research Workshop for Clinicians, Researchers and Industry Professionals 

(This is the only Weekend event that will be In-Person ***AND Virtual***)

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.

View our list of presenters here.



2:00- 4:00 pm:  Tour of Old City, Philadelphia, for Patients & Caregivers (optional with additional cost)



5:00 pm – 6:30 pm:  Welcome Reception & Weekend Kickoff for All Weekend Attendees

After three years of being virtual, this evening event will allow the DTRF to formally welcome patients, their family members, clinicians, researchers and industry professionals to Philadelphia. Let’s kickoff 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.



7:00 pm:  Networking Dinner for Researchers, Clinicians, and Industry Professionals


Saturday, September 23rd


7:00 am- 8:00 am:  Chair Yoga, Breathwork & Meditation with Malarie for All Weekend Attendees

After yesterday’s travel, the DTRF Welcome Reception, and a good night’s sleep, we invite all Weekend attendees to join us for this morning event to relax, center, and set your intentions for an exciting day ahead of learning and connecting.



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.

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

We’ve heard many times that this weekend provides opportunities for patients to feel that they’re not battling this disease alone. They’ve stated that our events are the first time they’d ever met someone else who truly “gets it.”    

This networking event will allow patients and caregivers to connect one-on-one during brief chats.



10:00 am- 11:30 amDTRF 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 signature patient support event. It includes educational lectures by leading clinicians, researchers, and other stakeholders. Content is geared toward our patient and caregiver community, but all are encouraged to attend this foundational event of the weekend.

View our list of presenters here.



Dinner On Your Own


 Sunday, September 24th


8:00 am:   RFA 5K & Fun Run for All Weekend Attendees (REGISTER HERE)

Join us for our first official race day since 2019! RFA, founded by desmoid tumor patient Sera Snyder in 2009, is the annual DTRF signature fundraising event. Our community comes together in Philadelphia to walk, run, and roll together as a unified force against desmoid tumors. By participating in RFA, anyone can build a team, create awareness, and help fundraise for a cure!


Read our blog for updates about the Weekend.

Learn more about past Patient Meetings below.