The Desmoid Tumor Research Foundation

Desmoid Tumor Patients and Families Gain New Online Support Community

Foundation News

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The Desmoid Tumor Research Foundation and The Desmoid Project have partnered with Smart Patients to launch an online community designed to expand opportunities for patients and families to connect, share support, and exchange knowledge.

The Desmoid Tumor Research Foundation and The Desmoid Project announced a joint partnership today with Smart Patients to launch a new online community for patients with desmoid tumors and their families. The community, now open to members worldwide, gives patients and caregivers a trusted, moderated space to connect, share support, and learn about the latest desmoid tumor research and treatment experiences.

The partnership addresses a critical need: helping patients and caregivers become more educated, informed advocates who can play an active role in their own care and in medical research. Through Smart Patients, members can ask questions, share treatment experiences, compare notes, and access up-to-date resources in a safe, trauma-informed environment.

Smart Patients hosts more than 100 condition-specific communities and has connected thousands of patients and caregivers since its founding over a decade ago. The collaboration with the DTRF and The Desmoid Project reflects a shared commitment to improving patient knowledge, confidence, and outcomes through peer-to-peer connection.

“We’re proud to announce a joint partnership with two leading organizations dedicated to the desmoid tumor community,” said Kathryn Burn, CEO of Smart Patients. “Together, we unite everyone looking for answers and support from others who know what they’re going through.”

The DTRF + The Desmoid Project x Smart Patients community is open now to patients and caregivers worldwide. To join, visit: Desmoid Tumor Community Landing Page

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Immunome announced the acceptance of a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for varegacestat, a once-daily oral gamma-secretase inhibitor (GSI) for adults living with desmoid tumors.

Why is this milestone important?

For patients and families navigating this rare and often unpredictable disease, continued progress in research and drug development is critical. While U.S. FDA review is still ahead, this acceptance reflects growing momentum across the field and reinforces the importance of collaboration between researchers, industry, and the patient community.

What happens next?

The FDA will now conduct a comprehensive, multidisciplinary evaluation of the therapy’s safety, efficacy, and manufacturing quality typically follows over the next 6 to 10 months. This process may include inspections and, in some cases, an advisory committee review.

The Desmoid Tumor Research Foundation (DTRF) is deeply grateful to the Immunome team and everyone who helped bring this moment closer. We look forward to the progress ahead for people living with desmoid tumors.

Read Immunome’s full press release below:

Immunome Announces U.S. FDA Acceptance of New Drug Application for Varegacestat for the Treatment of Adults with Desmoid Tumors

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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. Online registration is now closed (9/21).

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

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Immunome recently announced the submission of a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for varegacestat, a once-daily oral gamma-secretase inhibitor (GSI) for adults living with desmoid tumors.

Why is this milestone important?

For patients and families navigating this rare and often unpredictable disease, continued progress in research and drug development is critical. While regulatory review is still ahead, this submission reflects growing momentum across the field and reinforces the importance of collaboration between researchers, industry, and the patient community.

What happens next?

The FDA will now conduct an initial review over the next 60 days to determine whether to accept the application for formal review. If accepted, a comprehensive, multidisciplinary evaluation of the therapy’s safety, efficacy, and manufacturing quality typically follows over the next 6 to 10 months. This process may include inspections and, in some cases, an advisory committee review.

The Desmoid Tumor Research Foundation (DTRF) is deeply grateful to the Immunome team and everyone who helped bring this moment closer. We look forward to the progress ahead for people living with desmoid tumors.

“The varegacestat NDA submission marks an important milestone for Immunome. It reflects the strength of the RINGSIDE dataset and the commitment of the team advancing this program,” said Clay B. Siegall, Ph.D., President and Chief Executive Officer of Immunome. “We believe varegacestat has the potential to provide adults with progressing desmoid tumors with a meaningful new oral treatment option, and we are grateful to the patients, families, investigators and study site teams whose participation made this submission possible.”

Read Immunome’s full press release below:

Immunome Announces Submission of New Drug Application to U.S. FDA for Varegacestat for the Treatment of Adults with Desmoid Tumors