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    Synovial Sarcoma Registry, Latest News

    Synovial Sarcoma Foundation Wins First Place at the 16th Annual SPAGN Conference

    May 6, 2026 ayushis Comments Off on Synovial Sarcoma Foundation Wins First Place at the 16th Annual SPAGN Conference
    A collage of conference scenes: group photo, small group with certificate, speakers at podiums, attentive audience in a tiered auditorium, and conference banners displayed.

    We are incredibly honored to share that the Synovial Sarcoma Foundation received First Place in the Advocacy in Action Award at the 16th Annual SPAGN Conference in Stockholm, Sweden.

    Hosted by the Sarcoma Patient Advocacy Global Network (SPAGN), this award recognizes advocacy initiatives making a meaningful impact for sarcoma patients, families, clinicians, and researchers around the world.

    A collage of conference scenes including group photos, speakers presenting in an auditorium, attendees listening, and a woman holding a certificate with colleagues. Conference banners and presentation slides are visible throughout.

    “We can’t overstate what an honor this is. It is one of the highest levels of recognition an organization can earn in this community.”

    — Nathan Imperiale, Board Chairman

    SSF was recognized for our advocacy efforts to create real-world evidence to support research, all while advancing our clinical registry, biorepository, and international tumor board.

    For a rare cancer like synovial sarcoma, every patient story, every sample, and every piece of shared information matters. Because patient numbers are small and research is often fragmented, community participation plays a critical role in helping researchers better understand the disease and move future treatments forward.

    This recognition belongs to all of you: the patients, families, advocates, researchers, physicians, and supporters helping build something bigger together.

    If you or a loved one has been affected by synovial sarcoma, we hope you’ll consider participating in the Registry & Biorepository. Your involvement could help shape future research and bring us closer to better treatment options for the entire community.

    Learn more and enroll at:
    https://redcap.chop.edu/surveys/?s=CA89R49CP7AEXMPY

    Thank you for continuing to move this mission forward with us.

    ayushis

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    Recent posts

    • A scientist wearing safety glasses and gloves closely examines samples through a microscope in a laboratory setting, concentrating on her research.
      Breaking Down Synovial Sarcoma’s Defenses: A study on Immune Evasion and Targeted Treatment
    • A scientist wearing a lab coat, gloves, safety goggles, and a mask examines a test tube beside a microscope in a laboratory. Another scientist works in the background. Scientific equipment and screens are visible.
      When Synovial Sarcoma Hides in Plain Sight: A Diagnostic Wake-Up Call
    • A doctor wearing a white coat and stethoscope holds a glowing light bulb in one hand, symbolizing innovation or new ideas in healthcare.
      Rare Synovial Sarcoma Cases Highlight New Limb-Sparing Reconstruction Approach

    Tags

    Advocacy in Action Afami-cel CHOP clinical trial immunotherapy localized synovial sarcoma MAGE-A4 synovial sarcoma nonprofit drug development NY-ESO-1 synovial sarcoma personalized cancer treatment precision medicine radiation therapy for synovial sarcoma Rare Cancer Rare Cancer Europe rare cancer research rare soft tissue sarcoma research sarcoma clinical trials sarcoma research sarcoma surveillance sarcoma treatment soft tissue cancer soft tissue sarcoma solitary fibrous tumor SPAGN SS18 rearrangement SS18-SSX fusion SS18::SSX STAT6 positivity Synovial Sarcoma synovial sarcoma diagnosis Synovial Sarcoma Foundation Synovial Sarcoma Italy synovial sarcoma recurrence synovial sarcoma subtypes synovial sarcoma surgery synovial sarcoma survival synovial sarcoma treatment T-Cell Therapy targeted therapy T Cell TECELRA Tecelra T-cell therapy tumor size synovial sarcoma webinar

    Related posts

    A doctor wearing a white coat and stethoscope holds a glowing light bulb in one hand, symbolizing innovation or new ideas in healthcare.
    Development, Case Study

    Rare Synovial Sarcoma Cases Highlight New Limb-Sparing Reconstruction Approach

    May 29, 2026 ayushis Comments Off on Rare Synovial Sarcoma Cases Highlight New Limb-Sparing Reconstruction Approach

    A new case report published in the World Journal of Surgical Oncology explored an innovative reconstruction technique for rare soft tissue sarcomas of the hand and foot, including synovial sarcoma. The study was authored by Naoya Terao, Naoki Oike, Takashi Ariizumi, and colleagues, with research conducted primarily through the Division of Orthopedic Surgery at Niigata […]

    A healthcare professional in blue scrubs holds the hand of a patient in bed, offering comfort and support in a bright, sunlit room.
    Research, Rare Cancer

    Research Highlights Importance of Patient-Centered Sarcoma Surveillance

    May 22, 2026 ayushis Comments Off on Research Highlights Importance of Patient-Centered Sarcoma Surveillance

    A 2022 study explored how sarcoma patients feel about long-term surveillance imaging after treatment, highlighting the emotional, financial, and practical challenges that can come with ongoing follow-up care. The study, led by Sarah C. Tepper, Anna K. Holten, Cara A. Cipriano, and colleagues evaluated patient concerns surrounding surveillance imaging through the “Sarcoma Surveillance Survey.” The […]

    A close-up view of two hands in blue surgical gloves passing a surgical instrument under bright operating room lights.
    Case Study, Education

    Study Finds Tumor Size and Surgical Margins are Key Drivers of Synovial Sarcoma Outcomes

    May 20, 2026 ayushis Comments Off on Study Finds Tumor Size and Surgical Margins are Key Drivers of Synovial Sarcoma Outcomes

    A new multi-center retrospective study from three major U.S. sarcoma centers has analyzed outcomes in patients with localized synovial sarcoma, making it one of the largest modern cohorts to examine how tumor characteristics and treatment modality affect recurrence and survival in this disease. The study, led by Stefano Testa, Maggie Yuxi Zhou, and colleagues from […]

    The Synovial Sarcoma Foundation is a registered 501(c)(3) nonprofit organization. Tax ID number is 33-4027591. Contributions to the Synovial Sarcoma Foundation are tax-deductible to the extent permitted by law.

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