The Desmoid Project

The Desmoid Project is a trauma-informed, patient-led nonprofit supporting individuals living with a desmoid tumor through mental health programs, peer connection, and advocacy. Founded by patients, our work bridges the lived experience of the desmoid community with researchers, clinicians, pharmaceutical leaders, and policymakers. From weekly support groups to global advocacy tables, we help patients build resilience while ensuring their voices help shape research, care, and support systems.

Mission Statement: We help every person affected by desmoid tumors through compassionate support, trauma-informed mental health care, and connection that builds strength and resilience. By listening deeply and elevating patient stories to the systems that shape care, we work to ensure that research, treatment, and policy reflect the real needs and experiences of our community.