USA: Solitary Fibrous Tumor Foundation

SFTF profile, mission and activities

The Solitary Fibrous Tumor Foundation is a patient-led nonprofit organization dedicated to improving outcomes for people affected by solitary fibrous tumor, a rare soft-tissue sarcoma.

Our mission is to connect patients, caregivers, clinicians, researchers, and partner organizations; expand access to reliable education and support; strengthen the evidence base for SFT; and accelerate research toward more effective treatments and, ultimately, a cure.

SFTF priorities include patient and caregiver education, support for newly diagnosed patients, further development of patient-reported data and natural-history research, promotion of tissue and biospecimen donation, collaboration with sarcoma centers and investigators, scientific advisory board development, research advocacy, fundraising, and support for innovative clinical-trial approaches suited to rare cancers.

Additional details to feature

SFTF was created by people directly affected by SFT and is designed to serve a small, geographically dispersed global community. The foundation is building research-ready infrastructure by connecting patient data, biospecimens, genomic information, clinical expertise, and international collaboration.

SFTF is also working to elevate the patient voice in research planning and to ensure that patients and caregivers are treated as active partners in setting priorities, designing studies, and evaluating meaningful outcomes. Our broader goal is to reduce fragmentation across the SFT landscape and create a coordinated pathway from diagnosis and lived experience to research participation, clinical evidence, and new treatment options.