Synovial Sarcoma Foundation

06/11/2026

We’ve reached a big milestone: more than 200 patients and families have joined the Synovial Sarcoma Registry and Biorepository. To everyone who has taken part, thank you. You’re helping researchers better understand this rare cancer.

There’s still more to do. The more people who join, the more we can learn. Enrolling is easy and can be done from home, and it’s open internationally to anyone with synovial sarcoma, at any age.

Find out more and sign up through the link in our bio.

05/11/2026

Synovial sarcoma is rare, and myths about it are common. Here are seven we often hear in our community, and what the evidence says.

If you or someone you love has a lump that is growing, deep, or still there after a few weeks, it is worth showing a doctor, whether or not it hurts.

Rare does not mean alone. Link in bio to donate, join the registry or connect with other families.

04/11/2026

Every month, hope begins with people like you.

Behind every research project, every patient resource and every step forward for the synovial sarcoma community is a group of people who choose to give, month after month.

To our October monthly donors: thank you. Your steady support is helping advance an mRNA vaccine for synovial sarcoma and connects patients and families with resources they can trust. You are helping build a future with more hope and better outcomes for everyone this disease touches.

If you are looking for a meaningful way to make a lasting difference, we would be honored to welcome you into our Monthly Giving Community. Even a small monthly gift can change lives. Visit synovialsarcoma.org/donate.

Together, we are building a future beyond synovial sarcoma.

03/11/2026

When TCR-T therapy stops working, are the engineered T cells really gone?

New research suggests many patients still have them in their blood, sitting in a dormant state. And the pilot trial at Northwestern University, led by SSF Medical Advisory Board member Dr. Seth Pollack, is testing whether a drug called N-803 can wake these cells and help them fight cancer again.

The study is enrolling people with synovial sarcoma or MRCL whose disease progressed after TCR-T therapy.

Learn more: https://synovialsarcoma.org/can-we-reactivate-t-cells-after-tcr-t-therapy-stops-working/

A new pilot trial at Northwestern University is asking one of the most important questions in synovial sarcoma treatment: when TCR-T therapy stops working,

29/10/2026

The Synovial Sarcoma Biorepository and Registry Program gives patients an opportunity to take an active role in advancing research and improving future treatment options.

If you have an upcoming surgery to remove synovial sarcoma, consider joining the registry and donating your tumor tissue. Your participation can help move research forward and bring hope to our community.

Learn more and join through the link in our bio.🎗️

28/10/2026

Missed our latest webinar? The recording of Synovial Sarcoma Clinical Trials: Research Updates and Community Q&A is now on our Video Resources page.

You’ll find it alongside patient and advocate stories, conversations with researchers at CHOP and Penn Medicine, and webinars on surgery, clinical trials and life after treatment. We’ll keep adding new videos, so check back often.

Swipe through to see what’s there, and watch the full videos here: https://synovialsarcoma.org/video-resources/

28/10/2026

Your tumor sample could power the next breakthrough in synovial sarcoma research.

A new study published in Advanced Science followed 132 sarcoma patients over 10 years, growing their donated tumor tissue into living laboratory models and mapping each one’s DNA and RNA. Synovial sarcoma stood out - it grew into working models at a higher rate than any other sarcoma type in the study.

But here is what the study also confirmed: rarer sarcomas were underrepresented. Answering synovial sarcoma’s questions requires a collection built around synovial sarcoma patients.

That is exactly what the SSF Registry and Biorepository at CHOP and Penn Medicine is. It is the world’s largest synovial sarcoma patient cohort, and it is still growing.

If you or someone you love has been diagnosed, joining takes five minutes. A sample you no longer need for your own care could fuel studies like this one for years to come.

Read the full article here: https://synovialsarcoma.org/why-every-tumor-sample-matters-what-a-new-sarcoma-biobank-study-means-for-synovial-sarcoma/

A new study in Advanced Science (October 12, 2026) shows what becomes possible when patients donate tumor tissue and researchers pair it with detailed

27/10/2026

ICYMI: Our latest community webinar brought together four specialists to answer the questions families ask us most. Dr. Theodore Laetsch, Dr. Seth Pollack, Dr. Shanda Blackmon and Dr. Peter Mattei covered:

- How clinical trial phases work, and when to consider one
- Where mRNA vaccine research stands for synovial sarcoma
- Why getting the right surgeon the first time matters
- TumorGlow and the new pediatric trial at CHOP
- Biomarker testing, and why your stored tumor tissue still matters

The full recording is now on our YouTube channel. Watch by clicking the link below: https://youtu.be/4JikhdIYdwg?si=-ln-9bOwXnlj2EYe

Four sarcoma specialists join Synovial Sarcoma Foundation founder C...

26/10/2026

We’re excited to be attending the 2026 National Organization for Rare Disorders, Inc. (NORD) !

This summit brings together rare disease advocates, researchers, industry leaders, and policymakers to discuss ways to advance research, improve access to treatments, and strengthen the rare disease community.

We’ll be following conversations and sharing important takeaways that could help shape the future of synovial sarcoma research and patient advocacy.

Be sure you’re following along on our social media channels where we’ll be sharing updates, insights, and anything we think our community should know throughout the summit.

21/10/2026

The Synovial Sarcoma Foundation Tumor Board will convene virtually on October 23rd from 1–2 PM ET. 🩺

Hosted by Cancer Center at CHOP, Penn Medicine, and the Synovial Sarcoma Foundation, this multidisciplinary forum brings together medical professionals from around the world to discuss complex synovial sarcoma cases in both children and adults.

While the Tumor Board is open to medical professionals only, patients and families are encouraged to ask their oncologist or care team to join and present their case.

To join the Tumor Board or refer a case, please email [email protected]