Denise Robinson, EHE Foundation Executive Director and Director of Research, had the privilege of representing the Foundation at the 2025 ASCO Annual Meeting in Chicago, where tens of thousands of global oncology professionals gathered to share knowledge with a purposeful commitment to conquer cancer. 

The American Society of Clinical Oncology (ASCO) is the world’s leading organization for oncology, bringing together clinical and translational scientists, drug developers, and patients’ advocates. The EHE Foundation prioritizes this meeting to ensure that the voices and needs of EHE patients remain on the agenda and are actively involved in scientific advancements. 

Aside from having the chance to speak with many sarcoma care providers who are well-loved and much appreciated by EHE patients and the community, Denise had the opportunity to attend sessions and meetings where EHE was highlighted and ultra-rare sarcoma science was emphasized. Here are several highlights:

Denise Robinson, Executive Director and Director of Research, EHE Foundation

Pictured left to right: Steven Young, Denise Robinson, Michael Wagner

The SARC Semi-annual Meeting convened just before the opening of ASCO, where, importantly, a new EHE study was announced by Dr. Michael Wagner, Dana-Farber Cancer Institute. The study, entitled ‘A Phase II Trial of Nab-Sirolimus in Patients with Progressing or Symptomatic EHE,’ should begin in late summer 2025. Once details are finalized, we will invite Dr. Wagner to discuss this study opportunity with the community. Stay tuned for more information in the coming months. We are grateful to Dr. Wagner, Stephen Young, SARC CEO, and many experts who have supported this trial design.

Dr. Silvia Stacchiotti, Fondazione IRCCS Istituto Nazionale dei Tumori, and colleagues discussed the landscape and challenges of ultra-rare sarcomas in an educational session entitled ‘Ultra-rare Sarcomas: How Do We Move Forward?’ Dr. Stacchiotti highlighted that efforts to develop treatments in ultra-rare sarcomas (URS) require disease-drug focused discussion. Dr. Kevin Jones, University of Utah, highlighted the power of preclinical models in URS, which rely on tissue donation for model development. Dr. Mrinal Gounder, from Memorial Sloan Kettering Cancer Center, highlighted the challenges in drug development and emphasized that for URS, it requires “out-of-the-box” thinking. During Dr. Gounder’s presentation, he shared progress in EHE science from the Rubin Lab, TEAD inhibitors in development, and encouraging results in the ongoing VT-3989 Phase I/II Study. We are grateful for the significant efforts of Dr. Stacchiotti and many others for collaborating to advance treatments in EHE.

Tom Wei-Wu Chen, MD, PhD, National Taiwan University Hospital

Dr. Tom Wei-Wu Chen, National Taiwan University Hospital, presented a poster entitled ‘Heterogeneity in epithelioid hemangioendothelioma (EHE): Insights common and organ-specific tumor pathways’. Dr. Chen and his colleagues hypothesized that EHE tumors from different organs represent distinct tumor cells, and that understanding the key pathways associated with this heterogeneity could lead to the development of improved therapies. Their study found that common and organ-specific clusters represent different groups of EHE cells with differentially altered pathways. Data illustrated common clusters showed high correlation with the mTORC1 pathway, potentially explaining the reported benefit of sirolimus in EHE. We are grateful for Dr. Chen’s work and look forward to further advancements in EHE research.

Dr. Andrew Wanger, Dana-Farber Cancer Institute, presented ‘New Drugs for Rare Sarcomas: Getting Creative,’ pointing out that URS can and should be studied as distinct diseases, and at the EHE Foundation, we agree. Dr. Wagner serves on the PUSH Platform Executive Committee – a consortium of clinicians, scientists, and advocates committed to Pushing Ultra-rare Sarcomas towards Hope (PUSH).