TGCT Support is comprised of a group of passionate individuals from the Tenosynovial Giant Cell Tumor (TGCT) community, previously known as pigmented villonodular synovitis (PVNS). We have identified a need for a central location to provide education and resources to our community. All of our resources are based on up-to-date scientific information for patients and caregivers, as well as the medical community.
Rare diseases, including TGCT, are often misdiagnosed, misunderstood and are not widely supported by research funding. Awareness is a key factor in resolving these issues.
TGCT advocates were looking for a home for TGCT patients where they can feel validated and receive information that may impact their care and quality of life. They turned to The Life Raft Group (LRG), a non-profit organization that supports patients with another rare disease, Gastrointestinal Stromal Tumor (GIST). The LRG has been a leader in the rare disease community for over 20 years. The LRG is providing guidance and collaboratively working with the TGCT community helping them to establish programs and platforms. The Life Raft Group is a 501 (c)(3) non-profit organization (tax id: 82-0547746) providing support through information, education, and innovative research to patients with rare diseases. View our 990 Form here..
The mission of TGCT Support is to enhance treatment options and quality of life for TGCT patients through patient-powered research, education, empowerment, and global advocacy efforts.