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

The Desmoid Tumor Research Foundation

It’s time to accelerate desmoid tumor research.

Research

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Desmoid tumor research is moving forward, but we have an opportunity to move it faster.

We’re excited to introduce our brand new Accelerate Research Campaign, a community fundraising movement designed to speed the pace of discovery and drive progress toward better treatments, improved outcomes, and ultimately, a cure for desmoid tumors.

For more than 20 years, the DTRF has helped build momentum in desmoid tumor research by annually funding innovative research and fostering scientific collaboration around the world.

Through this campaign, we are leveling up our future impact and we invite YOU to be a part of it.

Accelerators are the driving force behind this campaign.

When you start a fundraiser, you become an Accelerator: someone who takes action when progress cannot wait.

By sharing your story and rallying your community, you help raise awareness, inspire giving, and accelerate the research that desmoid tumor patients are counting on.

You do not need to be a fundraising expert to make an impact. Our team is here to help you along the way.

Connect with us for support and explore our Fundraising Hub. 

Start your fundraiser. Share your story. Accelerate research.

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Our 2026 Together We Will Weekend on Sept. 25-27th is a place for patients and caregivers to feel seen, supported, and connected with a community that understands the desmoid tumor journey.

To help reduce financial barriers to attending, the DTRF created our first-ever Travel Access Program, which provides financial assistance for transportation and lodging for eligible participants to attend our annual event.

Key Dates & Details:

  • Application due date: July 30, 2026
  • Travel awards distributed: August 15–30, 2026
  • Assistance may cover: Transportation and lodging only
  • Please note: Conference registration is not included, and participants will still need to register for the event
  • Applications: Accepted on a rolling basis

You belong at the Together We Will Weekend. This program was created to help more patients and caregivers access the education, support, and connection that makes this Weekend so meaningful.

Apply Today

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Join us for the 2026 DTRF Together We Will Weekend, taking place September 25-27th in Philadelphia, PA at the Sheraton Philadelphia University City Hotel. This year’s gathering will bring together patients, caregivers, clinicians, researchers, and industry professionals for a dynamic and meaningful Weekend centered on connection, learning, and progress.

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.

Explore the Weekend’s full schedule and register today!

Get event updates and much more directly in your inbox by subscribing to our DTRF Newsletter.

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As a member group of the Sarcoma Patient Advocacy Global Network (SPAGN), the DTRF is excited to share the new 2026 Lay Summary of the Global Consensus Paper on the management of desmoid tumors, originally published in JAMA Oncology in 2024.

While the scientific article (only accessible with a JAMA Oncology subscription) was written for clinicians and researchers, the new lay summary translates its key messages into clear, accessible language for patients, families, and advocates.

Highly technical medical publications are essential for advancing care, but they are often difficult for non-specialists to interpret. Creating a lay summary helps bridge this gap by explaining complex medical information in a way that supports better understanding, informed conversations with healthcare teams, and stronger patient advocacy.

We are grateful to SPAGN for their dedication and collaboration on this impactful resource. Special thanks to DTRF Medical Advisory Board Member, Professor Dr. Bernd Kasper for his careful review and commitment to finalizing this invaluable tool for the desmoid community.

At the DTRF, we encourage patients and caregivers to review, download, and share this important document with your medical care team. 

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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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Last year, we came together to correct a critical misconception that desmoid tumors are NOT benign. This year, we are building on that momentum to go one step further and make sure the correct classification of desmoid tumors is front and center.

The medical community, research publications, and other sources often use differing terms when describing desmoid tumors. This confusion can lead to misunderstandings about treatment and minimizes the potentially serious consequences of this rare disease.

How are desmoid tumors classified?
Desmoid tumors (also known as aggressive fibromatosis, desmoid fibromatosis, and desmoid-type fibromatosis) do not metastasize. They are classified by the World Health Organization (WHO) as  “Intermediate (locally aggressive)” soft tissue tumors. They do not fall under “Benign” or “Malignant” classifications.

Learn more about the World Health Organization’s (WHO) classification of desmoid tumors, which is listed under Table II: Fibroblastic/Myofibroblastic Tumours.

How can you help Spread the Word?

  • Engage with us by sharing our all the campaign content with your social media networks.
  • Watch a recording of our Spread the Word educational webinar: “How Desmoid Tumors are Classified and Why It Matters for Patients.”
  • Amplify patient voices by watching and sharing our live event recording—featuring desmoid warrior, Morgan B.
  • Educate your community by sharing trusted resources from DTRF.org.
  • Learn more by visiting our “What is a desmoid tumor?” page.
  • Contact our team if your current medical institution or clinician uses an incorrect classification on their website or within their practice.
  • Support our mission by making a donation!

Join us today. Use your voice and help us Spread the Word on behalf of the desmoid patient community!