The Desmoid Tumor Research Foundation

2026 “Together We Will” Weekend Location & Date Announcement

Events

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We’re excited to invite the desmoid tumor community to our 2026 Together We Will Weekend, taking place September 25-26th in Philadelphia, PA at the Sheraton Philadelphia University City Hotel. This year’s gathering will bring together patients, caregivers, clinicians, and researchers for a dynamic and meaningful weekend centered on connection, learning, and progress.

The weekend will kick off on Friday, September 25th, with our 13th International Desmoid Tumor Research Workshop, where clinicians and investigators will share the latest scientific developments and collaborate on advancing desmoid tumor research. This will be followed by our Annual Patient Meeting, creating a unique opportunity for the broader community to engage directly with experts and one another.

Attendees can expect presentations on emerging research and new treatment options, along with opportunities to ask questions, exchange perspectives, and build lasting connections.

This year, we’re also introducing new types of presentations and experiences designed to broaden the conversation, bringing fresh perspectives on the patient experience, well-being, and the many dimensions of living with desmoid tumors. In addition, we’re creating more intentional and interactive ways for patients and caregivers to connect, learn from one another, and gain practical insights.

Whether you are newly diagnosed or have been part of this community for years, this weekend is designed to inform, support, and inspire. We hope you’ll join us in Philadelphia for what promises to be an engaging and impactful experience.

More details and registration information will be shared at the beginning of May.

In the meantime, we encourage you to join our DTRF Newsletter to receive all the 2026 Together We Will Weekend registration information and event reminders in your inbox.

Thank you to our Presenting Sponsor, SpringWorks Therapeutics and our Silver Sponsor, Immunome, Inc. for supporting this annual event.

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Thank you to our global desmoid tumor community of patients, caregivers, researchers, and medical professionals who traveled to Chicago and participated in the DTRF Together We Will Weekend. It was wonderful to connect with everyone in person in a brand new city! We are grateful to our Presenting Event Sponsor, SpringWorks Therapeutics, for making the Weekend possible.

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

  • September 12, 2025 – DTRF International Desmoid Tumor Research Workshop: Dedicated clinicians and researchers from around the world attended the Int’l Desmoid Tumor Research Workshop, presenting the latest desmoid tumor science and research advances. We’re honored to host this essential collaborative meeting each year, which helps steer the direction of desmoid tumor research and the Foundation’s funding priorities. Recordings of the Workshop’s presentations (including live Q&A) are now available. Check out this year’s photo gallery as well.
  • September 13, 2025 – DTRF Annual Patient Meeting: At the heart of our annual Weekend, patients, caregivers, clinicians, and researchers gathered to connect, collaborate and learn. Recordings of the educational presentations (including live Q&A) are available on our Patient Meeting Presentations page. Check out this year’s photo gallery.

The work continues to find better treatments and, one day, a cure for each and every desmoid tumor patient. Once again, on behalf of the DTRF team, THANK YOU!

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September is here, and so is Desmoid Tumor Awareness Month (DTAM)—a time to share stories, raise awareness, and come together as a community.

We’re excited to announce the winner of our first-ever DTAM Logo Contest, Cassandra Hernandez! Her artisitic design was chosen because it beautifully captures both the reality of desmoid tumors and the resilience of those who live with them. Scroll down to learn about her story and the meaning behind her logo.

Thank you to everyone who submitted designs—you’ve reminded us how special and talented our community truly is!⁠

The Story Behind the Logo

Diagnosed with a desmoid tumor in her right abdominal wall just over two years ago, Cassandra recalls the fear and uncertainty after her diagnosis:

In 2023, I was diagnosed with a desmoid tumor in my right abdominal wall. Weeks after an emergency gallbladder surgery, I realized I wasn’t healing the way I should and felt a knot near my ribs. In the beginning, there was so much uncertainty and confusion about what was going on and what I even had. Doctors initially thought it was a large hematoma, but it grew substantially in a short period and severe pain set in, so I kept advocating for more answers. Eventually, I found a wonderful team of doctors at City of Hope in Zion, IL, who ultimately diagnosed me with a desmoid tumor.

Cassandra’s logo design was inspired by the butterfly bush—a plant that is beautiful above ground and locally aggressive underneath the surface.

The butterfly bush reminded me of desmoid tumors. It grows deep and invades nearby spaces, but its beauty above ground symbolizes hope and resilience of the desmoid community.

This contest means a lot to me because it’s about taking back my power and finding pride in the challenges I’ve faced. My wish is that every patient and caregiver finds a part of themselves that continues to bloom and show their beauty, even in the hardest times.”

We are honored to feature her meaningful design in a variety ways in our DTAM campaign this year!

How YOU Can Get Involved This September:

DTAM is all about taking action! Here are five ways you can take part and help raise awareness this month:

  1. Follow us on Facebook, Instagram, LinkedIn & X to share our DTAM social media content and format a Twibbonize frame to your profile picture.
  2. Save-the-date for our Facebook Live Event with desmoid tumor patient, Tiffany Braswell on Thursday, September 25th at 6PM ET.
  3. Keep DTAM going by registering the educational webinar, “Pregnancy and Desmoid Tumors” on Friday, October 10th at 12PM ET. Submit your questions to our panelists ahead of time.
  4. Start a virtual fundraiser and share it with your community by launching your own RFA Virtual fundraising page.
  5. Give what you can, when you can by making a donation to support our mission. We can’t do our work with YOU.

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On the morning of Saturday, February 8th, the DTRF convened patients, caregivers, and clinicians for a special educational event in downtown Philadelphia. For the first time, DTRF partnered with the leading sarcoma center, Penn Medicine.

Roughly 35 attendees joined us for talks given by Penn Medicine sarcoma specialists on topics like medical therapies, fertility, interventional radiology, genetics, and surgery. Included also was a focus on our experts:  those living with desmoid tumors (in a patient panel) and clinicians treating patients (in a mock tumor board).

After the talks, everyone convened for lunch, where clinicians connected one on one with patients. 

One attendee stated, “Saturday was incredibly enlightening, and I now have several questions for my team at my upcoming appointment.”

We are so grateful to everyone who joined us for this special event, including our partners at Penn Medicine, and event sponsor, the Green Family Foundation.

View some of our event photos here. 

View the event schedule here.

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Thank you to our global desmoid tumor community of patients, caregivers, researchers, and medical professionals who traveled to Houston and participated in the DTRF Together We Will Weekend. It was wonderful to connect with everyone in person in a brand new city! We are grateful to our platinum event sponsor, SpringWorks Therapeutics, for making the Weekend possible.

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

  • September 20, 2024 – DTRF International Desmoid Tumor Research Workshop: Dedicated clinicians and researchers from around the world attended the Int’l Desmoid Tumor Research Workshop, presenting the latest desmoid tumor science and research advances. We’re honored to host this essential 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.
  • September 21, 2024 – DTRF Patient Meeting: At the heart of our annual Weekend, patients, caregivers, clinicians, and researchers gathered to connect, collaborate and learn. Presentations on research, treatments, and a special presentation on the patient experience. Recordings of these educational events (including live Q&A) are available on our Patient Meeting Presentations page.
  • September 22, 2024 – 2024 RFA Walk: Our community gathered together in person at the Houston Zoo and fundraised virtually around the world. Together, more than $55,000 was raised for desmoid tumor research! 

The work continues to find better treatments and, one day, a cure for each and every desmoid tumor patient. Once again, on behalf of the DTRF team, THANK YOU!

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A revision to the global consensus paper on desmoid tumor management has been published thanks to the hard work and collaboration of an international group of physicians, scientists, and patient advocates (collectively known as “The Desmoid Tumor Working Group”). Peter Hohenberger, MD, PhD, Bernd Kasper, MD, PhD, and Alessandro Gronchi, MD, led the group on this project.

By evaluating existing evidence from prior scientific publications, and incorporating the input of desmoid experts worldwide, the paper is a revised and updated evidence-based consensus on the management of desmoid tumors. It answers critical questions regarding approach to treatment recommendations, types of treatments, and pain management.

As there are varying treatments used for desmoid tumors and access to medical therapies and information greatly varies by country, many patients are treated based on the experience and expertise of a single physician which may be limited. DTRF has made it a priority to improve this situation by supporting the revision of this collaborative paper. The paper is, in part, the result of a 2023 DTRF grant, entitled “An evidence-based 2nd consensus on the treatment for desmoid tumors.”

Currently, the paper is only accessible through JAMA Oncology with a subscription​. A full version of the paper will be accessible after one year.

Patient guidelines will be developed and shared with the community as soon as they are published.

Current Management of Desmoid Tumors: A Review

The Desmoid Tumor Working Group led by Bernd Kasper, MD, PhD, and Alessandro Gronchi, MD

Access Global Consensus Paper