Isolation
Patients may never meet another person living with SFT. We create community and meaningful peer connections.
Solitary Fibrous Tumor Foundation
Found, heard, counted, and included.
We are building the trusted resources, research connections, and organized voice that people living with Solitary Fibrous Tumor deserve.
Why SFTF
A small community ready to move forward.
Solitary Fibrous Tumor is an ultra-rare sarcoma. Patients are scattered across cancer centers, countries, and online groups—often without disease-specific guidance or a clear path to expert care.
There is no shortage of caring, engaged people in this community. What we need is a stronger way to bring everyone together. That's what SFTF is building.
<1 in 1M
estimated annual incidence
NAB2–STAT6
defining gene fusion
Long-term
surveillance matters
New patient resource
A clearer way to understand SFT
Learn the basics, prepare for diagnosis conversations, understand risk, explore treatment pathways, and plan for long-term monitoring.
What you’ll find
- 01What SFT is and why Hemangiopericytoma is an older name
- 02How biopsy and nuclear STAT6 testing confirm diagnosis
- 03How Demicco risk scoring and WHO grading guide care
- 04When surgery, radiation, or systemic treatments may be used
- 05Why long-term scans and support for scanxiety matter
Why we formed SFTF
Closing the gaps that leave people behind.
SFTF was formed so no one affected by Solitary Fibrous Tumor has to navigate an ultra-rare cancer alone or without reliable guidance.
By bringing patients, caregivers, clinicians, researchers, and advocates together, we can turn a scattered community into a coordinated force for better care, stronger research, and lasting change.
Our mission
To improve the lives of people affected by SFT by fostering community, advancing education, accelerating research, and advocating for better outcomes and access to care.
Our vision
A world where every person affected by SFT has accurate information, a supportive community, effective treatments, and ultimately, a cure.
The gaps we are here to close
A focused response to the challenges of an ultra-rare cancer.
Knowledge gaps
Many physicians see only one or two cases in an entire career. We expand access to trusted patient and physician education.
Research funding gaps
Ultra-rare cancers often receive less attention and fewer resources. We help accelerate research and treatment discovery.
Policy gaps
Patients face distinct challenges involving access, disability, clinical trials, insurance coverage, and long-term care.
Our future priorities
01Patient education
02Newly diagnosed patient support
03Caregiver support
04Insurance advocacy
05Research funding
06Clinical trial awareness
07Physician education
08Community and peer connections
Get involved
Help give the SFT community an organized voice.
Join as a patient, caregiver, clinician, researcher, advisor, volunteer, or founding supporter.