USA: Synovial Sarcoma Foundation

Organisation Profile

Mission
Our mission is to transform the future of synovial sarcoma treatment by driving groundbreaking research, expanding clinical resources, and fostering a strong patient and caregiver community.

Profile & Background
Synovial sarcoma is a rare and aggressive cancer with limited treatment options, which makes coordinated research and shared data essential. The Synovial Sarcoma Foundation (SSF) was created to directly address these gaps and to accelerate progress. Today, the foundation supports major research programs at institutions including the Children’s Hospital of Philadelphia (CHOP) and Penn Medicine, and is expanding partnerships across the United States and internationally.

The organization is growing at a breakneck pace, establishing a national tumor board, building a global clinical registry and biospecimen repository, and convening an expanding network of researchers, clinicians, patients, and caregivers. SSF’s focus is to centralize the strongest data, accelerate scientific discovery, and push forward new treatment approaches as quickly as possible.

Key Activities
• Research Funding and Innovation: Supporting laboratory, translational, and clinical research at leading institutions, including development of new disease models to drive therapeutic discovery.
• Global Clinical Registry and Biospecimen Repository: Creating one of the most comprehensive synovial-sarcoma datasets worldwide, integrating clinical data, imaging, genomics, and biospecimens.
• National Tumor Board: Bringing together experts from major cancer centers to review cases, share insights, and advance standards of care.
• Patient and Caregiver Engagement: Expanding access to clinical trials, sharing patient stories, connecting families globally, and strengthening support resources.