USA: The Desmoid Project

Organization Profile, Mission, and Activities

The Desmoid Project (TDP) is a patient-founded, trauma-informed nonprofit organization dedicated to supporting individuals and families affected by desmoid tumors.

Mission Statement:

The organization’s mission is to support every person impacted by desmoid tumors through compassionate care, trauma-informed mental health services, and community connection that builds strength and resilience. By listening closely to lived experiences and elevating patient voices to the systems that shape care, TDP works to ensure that research, treatment, and policy reflect the real needs of its community.

Founded by patients for patients, TDP creates inclusive and supportive spaces where individuals affected by desmoid tumors feel seen, understood, and empowered. Its work addresses the emotional, psychosocial, and systemic challenges of living with a rare and chronic condition, complementing clinical care with community-based support and advocacy.

Core Programs and Activities:

• Trauma-informed virtual support groups: Multi-week sessions for patients and caregivers designed to foster connection, resilience, and emotional well-being.

• The Gathering Tree: One-time facilitated sessions that create space for shared experiences, mental health support, and peer connection.

• In-person retreats: Immersive experiences that deepen community, restore nervous system regulation, and provide healing through nature, reflection, creativity, and peer support.

• Patient advocacy initiatives: Efforts to elevate lived experience to clinicians, researchers, industry partners, and policymakers to improve care delivery and systems-level outcomes.

• Educational resources and programming: Accessible, patient-centered information designed to support patients, caregivers, and healthcare professionals.

Additional Information:

TDP offers ongoing mental health programming, advocacy initiatives, and educational resources directly through its website. These programs aim to reduce isolation, increase access to support, and strengthen resilience for individuals and families impacted by desmoid tumors, regardless of location.

More information about TDP’s programs and initiatives can be found on the Programs page.