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The Desmoid Tumor Research Foundation

Updated Desmoid Tumor Treatment Guidelines, funded in part by DTRF, Published in JAMA Oncology

Education

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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

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Desmoid tumors and the DTRF made the spotlight at the 2024 Annual Meeting for the American Society of Clinical Oncology (ASCO) in Chicago on Saturday. DTRF Executive Director Lynne Hernandez served as a faculty member this year at an educational session entitled “Leveraging Successful Partnerships to Improve Global Health Outcomes.”

Her talk focused on the critical role of patient advocacy organizations in building relationships between patients and physicians. The Foundation is grateful to our community of stakeholders— especially patients and doctors— for trusting us to serve as advocates in the space.

We thank ASCO, along with session chair Dr. Matias Chacon from IAF (Instituto Alexander Fleming) and SELNET and Denisse Evans from The Life Raft Group for their collaboration on this important session.

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Have you been the youngest person in the oncology waiting room?

Join the DTRF for a two-part event: “Times Are A-Changin’: Heading into Young Adulthood with a Desmoid Tumor.” This event is exclusively designed for young adults with desmoid tumors (ages 18-39).

In part one, learn tips and tricks for navigating the unique challenges and milestones young adults face like dating, moving out, and starting a career while taking ownership over your medical care. This webinar will be led by Dakota Fisher-Vance, a patient advocate and young adult living with a desmoid tumor. Tune in the following night for a special “Speed Desmoidian-ing” virtual networking event just for young adults with desmoid tumors facilitated by two of their peers.

Part 1: Informational Zoom Webinar
⏱️ Tuesday, April 16th, 7:30-8:30 pm ET
Register: https://bit.ly/4cysryG

Part 2: “Speed Desmoidian-ing” Virtual Networking Event
⏱️ Wednesday, April 17th @ 7:30-9 pm ET
Register: https://bit.ly/4a0QLY9

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THANK YOU to our global desmoid tumor community of patients, care partners, researchers, and medical professionals, who traveled to Philadelphia and participated in the DTRF Together We Will Weekend. It was wonderful to be in-person again! We are grateful to our platinum event sponsor, SpringWorks Therapeutics, for making the Weekend possible!

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

  • September 22, 2023 – DTRF International Desmoid Tumor Research Workshop: Dedicated clinicians and researchers from around the world attended the 10th Annual DTRF International Desmoid Tumor Research Workshop, presenting on the latest desmoid tumor science and research advances. We’re honored 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.
  • September 23, 2023 – DTRF Patient Meeting: At the heard of our Weekend, patients, caregivers, clinicians and researchers gathered to connect, collaborate and learn together. 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 Presentation/Media page.
  • 2023 RFA Virtual Champions Awards Ceremony: Scheduled for Sunday, September 24, 2023, the RFA 5K & Fun Run was cancelled due to a named storm on the East Coast, and we had to pivot to 100% virtual fundraising. Our community did not disappoint. Together, more than $63,000 was raised for desmoid tumor research! On November 2nd, the ceremony was streamed LIVE on Facebook! | WATCH

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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Today is the final day of Desmoid Tumor Awareness Month 2023!

Over the last month, we have shared stories from #DesmoidWarriors around the globe at different stages in their journeys with different perspectives on managing life with these rare tumors. Thank you to all of the patients who submitted their stories, and to all who shared them across social media. You have helped raise #DesmoidAwareness!

If you are living with this disease, please know you are not alone in this fight. We encourage you to explore our Patient & Caregiver Resources.

In case you missed them, recordings of our special Desmoid Tumor Awareness Month Facebook LIVE stream events are available:

You can help raise #DesmoidAwareness year-round by talking about your desmoid tumor journey to family and friends, as well as your physicians, and raising funds for desmoid tumor research around special occasions like birthdays, diagnosis anniversaries, holidays, and more. Start a Facebook fundraiser with one click or learn about other Fundraising options.

Stay up to date with the latest in desmoid tumor-related news from the DTRF by favoriting us on Facebook, following us on X @dtrfoundation and Instagram @dtrfoundation, and by signing up for our emails.

Thank you for making a difference this September!

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The annual DTRF Together We Will Weekend is September 22-24! We hope you’re already making plans to be there with us in Philadelphia, but just in case you need a little convincing, here are the top 5 reasons to attend!

1. To connect.

Patients often say that the moment they first met another desmoid tumor patient in person is the moment they stopped feeling alone.

When you attend the annual DTRF Together We Will Weekend, you will meet other desmoid tumor patients (perhaps for the very first time), connect more deeply with those you already know, and/or be the veteran patient that shares your experience and wisdom with someone newly diagnosed. Whatever your circumstances, these personal connections are invaluable and can make this journey a little easier.

This is the largest annual gathering of desmoid tumor patients in the world. Be a part of this foundational weekend!

2. To be part of something bigger.

Every attendee arrives with one significant thing in common: first-hand, personal experience with desmoid tumors. So, even if you come by yourself and you’re not an extrovert, it’s easy to connect with others quickly and naturally build your community of support.

Stickers colored to represent the location of your tumors are available to add to your name tag, making it simple to find others with a similar experience. The DTRF Together We Will Weekend is a warm and welcoming space for all affected by this rare disease and the perfect place to get to know your community!

This year, fostering collaboration between our patients/caregivers and our desmoid tumor experts is a top priority, because we all have the same goal of working together to improve outcomes and eventually find a cure for desmoid tumors. It will take every facet of our community to reach that goal, so let’s connect, collaborate and learn from each other!

3. To empower yourself.

Being your own best advocate means staying abreast of the latest advancements in desmoid tumor research and treatments.

The experts attending the DTRF Together We Will Weekend present on new research, promising medical therapies, upcoming clinical trials, and brand new therapeutic options, often months, sometimes years, before they become widely known in the field. Desmoid tumor research is advancing every single year and therefore no annual event is alike.

Gain the knowledge you need to ask the right questions, become aware of cutting-edge research to share with your physicians back home, and make informed future treatment decisions.

4. To learn and share.

Our distinguished speakers are leaders in the field of desmoid tumors and their presentations aim to deliver the most updated information on research, potential treatments and ways to help our community find answers.

Cryoablation, HIFU, Nexavar, nirogacestat (SpringWorks Therapeutics’ gamma-secretase inhibitor), and AL102 (Ayala Pharmaceuticals’ gamma-secretase inhibitor) were all presented at DTRF Patient Meetings months, in some cases years, before becoming widely known in the field.

One of the best ways a patient can ensure proper treatment is by staying up to date on the research and advancements in the field. Patients often feel more confident making difficult treatment decisions when they can also consider what is on the horizon.

During DTRF Together We Will Weekend, the learning flows both ways. The weekend is structured as an ongoing conversation between experts and patients, an information exchange that benefits our entire community. This is your chance to ask some of the top physicians and researchers your questions in person and share your unique desmoid tumor experience.

5. To celebrate our community, raise awareness and have fun at the RFA 5K Run & Walk!

Now that we are meeting in person again (finally), our annual weekend will culminate with the RFA 5K Run & Walk. Don’t let the name fool you, we welcome ALL types of participation. Our accessible course in beautiful Fairmount Park, Philadelphia provides the perfect backdrop for a day of fun and celebration. Even some of our medical and industry partners are bringing teams this year! Yes, the kids’ Fun Run will be back too! Click here to register for RFA.

Can I still fundraise?

Absolutely! Just like the “virtual” years after Covid, you have the option to create a personal fundraiser to encourage giving. Click here to register for RFA, share your challenge with your friends and family, and join our RFA Champions Chat on Facebook to connect with other Champions who are fundraising virtually. The RFA awards ceremony on 9/24 will be live streamed from Philadelphia–virtual fundraisers are included!