Last week EHE Foundation Director of Research Denise Robinson, attended the Connective Tissue Oncology Society (CTOS) 2023 annual meeting in Dublin, Ireland. Every year, physicians, scientists, and advocates from around the world come together to advance patient care and increase knowledge in connective tissue tumors. EHE is one of over 100 subtypes of sarcoma, which develops in soft or connective tissue.
The week began with the Ultra-Rare Sarcoma Working Group (URSWG) meeting. EHE is considered an ultra-rare sarcoma, defined as having an estimated incidence (or frequency of occurring) in less than 1 per 1,000,000 people. Dr. Silvia Stacchiotti led the meeting with Dr. Tap and colleagues to discuss innovative approaches to conduct clinical trials in ultra-rare sarcoma. Thank you Drs. Stacchiotti, Tap, and all who contributed to the meeting!
The EHE Foundation and EHE Rare Cancer UK met with and are working collaboratively with a team of clinicians, data experts, and drug repurposing experts to bring forward a clinical trial platform, PUSH – Pushing Ultra-rare Sarcoma through Hope. Stay tuned as this initiative grows enabling clinical trials that will investigate and find effective treatments for EHE. Many thanks to the Anticancer Fund and Italian sarcoma contingent at CTOS, for bringing passion, talent, and experience to advance patient treatment options.
Many thanks to Dr. Tom Wei-Wu W. Chen, MD, PhD, Attending physician, National Taiwan University Hospital, Taiwan (Republic of China) for his poster, “Critical Molecular Pathways Associated With Different Histopathology Features And Detailed Patterns Of Immune Cell Infiltrates In Epithelioid Hemangioendothelioma (EHE)”. Their research aimed to uncover the critical molecular pathways based on histopathology features and the pattern of immune cell infiltrates in EHE. The study included four (4) EHE patients, and in speaking with Dr. Chen, he envisions a larger study in the future.
Thanks to Sarcoma Patient Advocacy Global Network (SPAGN), patient advocates had an increased presence at CTOS 2023. SPAGN hosted advocates to encourage collaboration on initiatives to advance sarcoma research. Their presentation, “What Is A Sarcoma Specialist Centre? Addressing The Need For Core Principles And A Globally Acceptable Definition,” focused on patients’ access to high-quality, specialized care and the importance of being evaluated by a multidisciplinary team. Listen here for more.
Denise reported, “CTOS is an important convening to connect and collaborate with sarcoma experts who are bringing novel ideas and experience together to improve the lives of sarcoma patients. It was an honor to meet so many expert clinicians and researchers, as well as other patient advocates who are all invested in finding treatments and cures for these complex cancers.”