Join us in Philadelphia from Sept. 25-27th for our "Together We Will" Weekend: - Register today!

The Desmoid Tumor Research Foundation

What’s New with the DTRF Together We Will Weekend?

Together We Will Weekend

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Location: Being in Old City Philadelphia is NEW & Different

Old City Philadelphia is the perfect place to visit with your family for the DTRF Together We Will Weekend. It is quaint, and has so many historical landmarks in a small footprint. Step right outside the hotel for local tours and cobblestone walkways. When you’re not networking with us, you’ll be soaking up autumn in our nation’s birthplace.

New Event: Tour of Old City, Philadelphia

Since our hotel is in the historic district, we are organizing an optional walking tour for Friday afternoon. See the sights and connect with fellow patients and caregivers. More details to follow! 

New Event: Welcome Reception & Weekend Kickoff

We invite everyone to gather for happy hour and light appetizers on Friday evening from 5:00-6:30 pm. 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 kick off the weekend with connection and comradery as we celebrate being together once again!

Who will be there? Patients, Caregivers, Clinicians, Researchers & Industry Partners are Invited

Is there an additional cost? No, this is included in your weekend registration.

New Event: Early Morning Meditation & Stretching

After Friday’s travel, the Welcome Reception, and a good night’s sleep, we invite all Weekend attendees to join us Saturday morning, from 7:00-8:00 am to relax, center, and set your intentions for an exciting day ahead of learning and connecting.

Who will be there? Patients, Caregivers, Clinicians, Researchers & Industry Partners are invited

Is there an additional cost? No, this is included in your weekend registration.

New Event: “Meet the Doctors and Researchers” Networking Breakfast

On Saturday from 8:00-9:30 am, patients will have the opportunity to meet each other as well as doctors and researchers. Over coffee and an informal breakfast, you’ll have the chance to sit at roundtables where you can share experiences and ask general questions about treatment options, tumor locations, research, and other things on your mind. Each roundtable will cover a different topic.

Note that each desmoid tumor case is different. These conversations are not intended to answer questions about or offer 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 your own healthcare team’s advice and services. 

Who will be there? Patients, Caregivers, Clinicians, Researchers & Industry Partners are invited

Is there an additional cost? No, this is included in your weekend registration.

New This Year: Fees for Registration

This is the first year we have implemented a registration fee for our annual weekend. As we began planning the Weekend, we knew we wanted it to be transformative for our entire community. The registration fee allows us to offset increased costs of providing opportunities for our patients and caregivers to have conversations with our clinicians and researchers, sharing experiences about what it means to live with, treat and research this disease

20% early bird discounts for both the Weekend and the RFA 5K & Fun Run are available through 4/30/23, and the DTRF is subsidizing the hotel room cost by $50/night. We hope that these accommodations will help you all come and enjoy this inspiring weekend. 

“I let others see these vulnerabilities and it brings them into the journey with me. And by sharing my story and some of my tears, and all of my pains, others come to understand how important the research is to me and to all of us.”

Rachel S.

What hasn’t changed?

The DTRF International Research Workshop

On Friday, clinicians and researchers will take part in the DTRF International 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 and treatment from a variety of disciplines. The Research Workshop not only 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. Participants in the Research Workshop are invited to the Welcome Reception which follows, and then a special dinner off-site to continue important conversations and collaborations.

“Thanks so much for all of your efforts, the meeting was truly fantastic and I made new connections which will help desmoid research to move forward.”

DTRF Research Workshop Attendee

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.” Our Community Networking Event for Patients & Caregivers provides connection with others who share common experiences.

“I loved this opportunity to connect with other desmoid patients and caregivers! I appreciated the conversation prompts, and especially enjoyed having one-on-one conversations with a variety of people.”

DTRF Together We Will Weekend Attendee

The DTRF Patient Meeting

Founded in 2007, the DTRF Patient Meeting is our signature patient support event. The meeting includes educational lectures by leading clinicians, researchers, and other stakeholders. 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.

Finally, the RFA 5K & Fun Run, formerly known as Running for Answers, is back on the ground in Philadelphia! Fundraise for the DTRF while you run, walk or roll your way around Fairmount park. Share your fundraising page with friends and family near and far. Let’s see how much fun we can have while we fundraise for a cure. Wear your crazy socks and be prepared for lots of laughs, and don’t forget the free cheesesteaks and ice cream! No Philly event is complete without a tasty reward. You will have earned it!

“Giving back through raising funds for the DTRF helped me find some purpose despite the many horrible facets of a desmoid tumor diagnosis.”

Meredith B.

This weekend is jam packed with events designed to bring you together in the most educational, collaborative and supportive ways. We will see you in Philly!!

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THANK YOU to our global desmoid tumor community of patients, care partners, researchers, and medical professionals, who attended and participated in the DTRF Together We Will Virtual Weekend. We are grateful to our platinum event sponsor, SpringWorks Therapeutics, for making the Weekend possible! #DTRFWeekend2022

Together we advanced research, connected, empowered ourselves, and fundraised for a cure, while celebrating our community and Desmoid Tumor Awareness Month!

  • 2022 DTRF International Desmoid Tumor Research Workshop: 160 dedicated physicians and researchers from more than 25 countries registered for our virtual 9th Annual DTRF International Desmoid Tumor Research Workshop! We’re honored to be able to host this important collaborative meeting each year, which helps steer the direction of desmoid tumor research and the Foundation’s funding priorities. Learn more about the annual DTRF International Desmoid Tumor Research Workshop.

If you couldn’t join us last weekend, here’s how you can access the recorded events:

  • 2022 DTRF Annual Patient Meeting Webinars 1, 2, & 3: The recordings of these educational events (including live Q&A) are available to view (along with transcripts) on our Patient Meeting Presentation/Media page.
  • 2022 DTRF RFA Virtual Challenge Ceremony: The ceremony was streamed LIVE on Facebook! Watch the recording of the entire ceremony. It’s sure to brighten your day! Thanks to the hard work of our RFA Challengers, and the generosity of other donors and sponsors, we’ve raised more than $130K, with donations still rolling in. Please note that your fundraising pages will stay open for a few months, so we encourage you to keep going! Or, start a Facebook fundraiser with one click.

The work continues to find better treatments and, one day, a cure! Once again, on behalf of the DTRF team, THANK YOU!

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Registration is *NOW OPEN* at DTRF.org/weekend for the 2022 DTRF Together We Will Virtual Weekend (Sept. 23-25), kicking off our summer-long RFA Virtual Challenge virtual fundraiser!

As a reminder, the primary events of our signature September weekend will be held *virtually* once again. However, we also hope to host a special, outdoor, in-person community event at Fairmount Park in Philadelphia on the morning of Sunday, September 25th.

Plan to join your community this fall, and TOGETHER WE WILL…

  • CONNECT patients and care partners from across the globe at our International Virtual Community Networking Event.
  • EMPOWER OURSELVES with information from top physicians and researchers studying and treating desmoid tumors at the signature DTRF Annual Patient Meeting Webinars.
  • FUND A CURE all summer long with the #RFAVirtualChallenge community fundraiser! Go the #Distance4Desmoids and we’ll celebrate with a LIVE virtual ceremony to close the Weekend. Learn more.
  • ADVANCE RESEARCH by hosting some of the brightest researchers and medical professionals from across the globe at the DTRF International Desmoid Tumor Research Workshop. (*Researchers and medical professionals ONLY*)

Stay informed by adding us to your Favorites on Facebook and signing up to receive our emails.

Learn more about the Weekend events.

(#DTRFWeekend2022)

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Thank you to our global desmoid tumor community of patients, care partners, and medical professionals, who attended and participated in the DTRF Together We Will Virtual Weekend! (#DTRFWeekend2021)

Together we advanced research, connected, empowered ourselves, and fundraised for a cure, while celebrating Desmoid Tumor Awareness Month!

**Thanks to the hard work of our RFA Challengers, and the generosity of other donors and sponsors, we’ve SURPASSED our fundraising goal of $200,000!** Please note that your fundraising pages will stay open for a few months, so we encourage you to keep going! Or, start a Facebook fundraiser with one click. 

  • 2021 DTRF International Desmoid Tumor Research Workshop:  170 dedicated physicians and researchers from ~100 institutions in 30 countries registered for our virtual 8th Annual DTRF International Desmoid Tumor Research Workshop! We’re honored to be able to host this important collaborative meeting each year, which helps steer the direction of desmoid tumor research and the Foundation’s funding priorities.

If you couldn’t join us last weekend, here’s how you can access the recorded events:

  • 2021 DTRF Annual Patient Meeting Webinars 1 & 2: The recordings of these educational events (including live Q&A) are available to view on our Patient Meeting page.
  •  2021 DTRF RFA Virtual Challenge Ceremony: This uplifting celebration is available to view on Facebook.

The work continues to find better treatments and, one day, a cure! Once again, on behalf of the DTRF team, THANK YOU!