The Desmoid Project
The Desmoid Project was launched in September 2023 in response to an urgent need for patients’ unmet advocacy services and resources. Founded for patients, by patients, this organization’s mission statement is to enhance the quality of life for desmoid tumor patients, their families, and caregivers through comprehensive support and advocacy by creating a roadmap, developing resiliency tools, increasing knowledge, and empowering patients to navigate and thrive with this rare disease.
