Photo: Attendees at this year's International Chordoma Research Workshop
A record 230+ researchers, clinicians, patients, and loved ones from around the world joined us in Boston for this year’s back-to-back International Chordoma Research Workshop and Community Conference.
Across both events, the increasing pace of progress and growing strength of our community were palpable.
At the Research Workshop, clinicians and scientists from 16 countries and a wide range of disciplines came together to deepen our understanding of chordoma and advance our collective efforts to improve patient care and outcomes. New findings were presented across more than 80 talks and poster presentations, including by more than 30 of our grantees. Several key themes stood out, as summarized below.
At the Community Conference, participants learned about the implications of these findings for the future of chordoma care, while sessions on survivorship, research participation, fundraising, and peer connection reinforced a core point of our Strategic Plan: everyone has a role in advancing research and improving care for people affected by chordoma.
Throughout both events, patient perspectives helped frame the conversations, and we celebrated the extraordinary contributions of individuals—researchers, volunteers, philanthropists, and advocates—who have made an outsized impact on our shared mission.
We left Boston energized by how much our community has grown in strength and capability, and even more confident about what we can take on next. We’re grateful to everyone who took part, and excited to keep moving forward together.
Finally, thanks to our event sponsors: Mass General Brigham Cancer Institute, Brown University Neurosurgery Foundation, Cedars-Sinai, Icotec, Northwell Health, NYU Langone Health, and Penn Medicine Radiation Oncology.
Key themes from our 2026 conferences
- More nuanced tumor subtyping
Results from multiple groups have revealed biological patterns that distinguish some chordomas from others, and which are associated with better or worse patient outcomes. For example, several studies have converged on key differences between chordoma tumors containing high or low numbers of immune cells. These insights could enable more tailored treatment approaches and improved prognostic confidence. Further research is needed to better understand how these differences affect tumor behavior, and to test therapeutic approaches geared to the biology of each subtype.
- Encouraging trial results
Interim results from the ongoing pembrolizumab plus pemetrexed clinical trial we’re supporting suggest the combination is well tolerated, and tumors have shown response in most patients treated so far. Tumor shrinkage was also observed in nearly half of patients on the recently completed cetuximab trial, adding to mounting evidence that some chordoma patients benefit from EGFR inhibitors. Further research is needed to understand which patients are most likely to benefit.
- Increasing feasibility of clinical development for chordoma drugs
Multiple studies showed consistent outcomes for chordoma patients treated with various drug therapies at different institutions, providing a strong historical benchmark for evaluating future treatments. Discussions focused on plans for a platform trial to streamline therapy evaluation and a prospective external control study that could reduce the need for randomization. Importantly, FDA and European Medicines Agency representatives offered valuable insights on evidence needed for drug approvals in ultra-rare cancers like chordoma and opportunities to work with regulators to resolve remaining questions.
- Momentum in brachyury drug discovery
After years of effort by multiple groups, the company X-Chem presented the first compound to bind brachyury with submicromolar affinity—a key milestone that opens the door to several types of drugs previously out of reach. In Boston, we recognized this remarkable accomplishment with the inaugural prize in our ongoing TBXT Challenge. Other groups shared encouraging progress on different approaches to targeting brachyury, suggesting that multiple treatment modalities may soon be within reach. New findings also pointed to ways to target brachyury indirectly, offering potential alternate or complementary paths to exploiting this key chordoma vulnerability.
- Emerging opportunities to target chordoma’s cell surface
Researchers reported early results from several ongoing studies identifying proteins on the surface of chordoma cells that could be targeted by powerful new treatment approaches such as antibody-drug conjugates, engineered immune cells, and radioligands. Promising approaches to targeting pieces of the brachyury protein displayed on the cell surface were also presented. To build on this progress, we announced an upcoming joint funding opportunity with The Mark Foundation for Cancer Research to identify and validate surface targets and develop the knowledge and resources needed to bring these therapies to chordoma; more details will be available soon.
- New insights paving the way for chordoma immunotherapy
Seven researchers supported by our joint translational immunotherapy grants program with the Cancer Research Institute shared findings that help lay the groundwork for applying immunotherapy to chordoma. In addition to identifying potential immunotherapy targets on the cell surface, they illuminated barriers that must be overcome for these therapies to work. In particular, multiple groups found that fibrous tissue within tumors keeps immune cells from reaching tumor cells, and explored how this happens and how this barrier could be overcome. Others revealed how the immune landscape in chordomas changes in response to therapy and shared early clues about which patients may be most likely to benefit from immunotherapy.
- Continued improvements in care
Clinicians shared advances in surgery, radiotherapy, and imaging that are improving patient outcomes, while identifying remaining limitations and questions that need to be addressed through future research. Plans for generating needed evidence from patients treated across multiple centers were discussed; this is a key effort we’re pursuing as part of our Strategic Plan. Discussion also centered on the recently updated treatment guidelines for primary localized chordoma, and topics to be addressed in planned guidelines for recurrent and advanced disease.
Photo highlights (Ben Resnik Photography):
