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Latest EHE News, Events and Research
Research Roundtable: Advocacy in Action
In late January, 2025, EHE advocacy leaders from The EHE Foundation, EHE Rare Cancer Charity UK, and EHE ITALIA Associazione Non Solo LAURA ODV coordinated a joint meeting with expert clinicians and researchers in Amsterdam, The Netherlands. Stakeholders from Italy, the United Kingdom, and the United States reviewed progress on ongoing collaborative research programs and explored key research […]
Results of a Phase 2 Trial of Trametinib in Advanced EHE
Dr. Schuetze will provide an overview of the rationale for treatment of EHE with trametinib, an oral inhibitor of the MEK kinase; the trial design of 10015/SARC033; and the results of the primary and secondary study endpoints. The presentation will also include an update on exploratory investigation of blood-based biomarkers including hemoglobin, C-reactive protein, and […]
Sirolimus for the Treatment of EHE
Dr. Silvia Stacchiotti, Medical Oncologist at the Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy, joined us on January 22, 2025, for an informative presentation and discussion about sirolimus for the treatment of EHE. She highlighted data currently available on the use of sirolimus as compared to other systemic therapies used to treat EHE and […]
Highlights from CTOS 2024
In November, Denise Robinson, Executive Director and Director of Research attended the CTOS 2024 Annual Meeting in San Diego, CA. The Connective Tissue Oncology Society (CTOS), is a professional medical organization that brings together multi-disciplinary clinician-scientists, translational researchers, and advocates from all over the world to advance the treatment of sarcomas. Many of the world’s […]
The Pledge: Edition 38, Q3 – July-September, 2024
Publication of The Pledge quarterly newsletter is led by the EHE Rare Cancer Charity (UK). EHE patient advocacy groups from around the globe. provide content including research news, patient and fundraising stories, and much more. Click here to view the most recent edition of our online EHE newsletter, The Pledge.
The EHE Foundation Announces Grant Funding of $307,400 to Advance Research and Find Treatments for EHE
We are pleased to announce The EHE Foundation’s 2024 Research Grants Program awards, totaling $307,400, as part of our ongoing commitment to advance our mission to find effective treatments and a cure for EHE. Made possible by 2023 Giving Tuesday gifts, these grants support novel translational research projects that aim to identify and accelerate the […]
Science Saturday: EHE Research Progress & Momentum
Join the EHE Foundation for a special Science Saturday on Rare Disease Day, February 28, 2026, 11:00 am – 12:30 pm ET. This virtual event is designed for anyone affected by EHE who wants an up-to-date view of the EHE research landscape. This free, interactive presentation will highlight Foundation-led research, global scientific advances, and the […]
Reflecting on 2025 and Looking Ahead With Purpose
For the global EHE community, 2025 brought challenges, resilience, and momentum. Grounded in connection and a shared commitment to progress in EHE, we look back with emotion, appreciation, and gratitude, and in 2026, we look forward with determination and hope.
Translating molecular mechanisms of EHE to improve patient outcomes
Scientists know that most EHE tumors are caused by specific genetic changes called gene fusions. In most people with EHE, two genes, WWTR1 and CAMTA1, are abnormally fused. In a smaller number of cases, a different fusion involving YAP1 and TFE3 is present. In a recent review published in Critical Reviews in Oncology/Hematology, the authors […]