Inciteful Med SFT Patient Guide
A guide to navigating SFT diagnosis, treatment, risk, and long-term monitoring.
Open resourceFor patients and caregivers
SFT patient resources
An ultra-rare diagnosis can feel isolating. These community-created resources offer places to find support, learn about research, and hear from people who understand the SFT experience.
Support
Connect with the SFT community
Talk with patients and caregivers who understand the questions and emotions that can come with SFT.
Support resources coming soon.
Research and education
Help move SFT knowledge forward
Learn about SFT and explore opportunities to contribute records, tissue, participation, or funding to focused research.
Horowitz SFT Initiative
The University of Miami Health System initiative advancing focused research for Solitary Fibrous Tumor.
Open resourcePattern
A Rare Cancer Research Foundation initiative that enables patients to donate tumor tissue and medical information for research.
Open resourceSupport SFT research at UT Dallas
Honor Dr. Heather Hayenga’s legacy by helping to fund laboratory research focused specifically on SFT.
Open resourceClinicalTrials.gov
Clinical trials are often where new sarcoma treatments are tested. Because SFT is rare, trials may be listed under sarcoma rather than SFT specifically. Patients can search independently, but it is often more effective to ask their care team to actively look for relevant trials and discuss options together as part of treatment planning.
Open resourceSarcoma Treatment Centers (SFA)
Many patients seek care or second opinions at centers with dedicated sarcoma programs. This list from the Sarcoma Foundation of America reflects sarcoma expertise broadly — patients are encouraged to contact centers directly and ask about SFT experience.
Open resourceSarcoma Alliance Second Opinion Grants
Some patients may benefit from financial assistance to obtain a second opinion at a sarcoma center. The Sarcoma Alliance offers Second Opinion Grants that may help cover travel and consultation costs.
Open resourceStories and conversations
Listen, read, and feel less alone
Explore podcasts, newsletters, and personal accounts from the wider SFT community.
Doctors Making a Difference
Listen to conversations with physicians and advocates, including episodes about SFT research, treatments, and hope.
Visit resourceWhat 116 SFT Patients Want Us to Know
Steve McBee’s First Draft article sharing findings and perspectives from the SFT community.
Visit resourceEmily Fortier’s Story
A mother and wife writes about living with the uncertainty of SFT.
Visit resourceRoad Trip with Cancer
Ann Pederson shares her personal experience through her newsletter.
Visit resourceA note about these resources
External resources are shared for education and community support. SFTF does not control their content, and inclusion does not replace guidance from your medical team. Resource list adapted from “Lori’s Resources for Solitary Fibrous Tumor Patients from SFT Patients,” updated February 26, 2026.