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Latest EHE News, Events and Research
The Pledge: Edition 43, Q4 – October-December, 2025
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 the online EHE newsletter, The Pledge.
Understanding Quality of Life for People Living With EHE
The European Organisation of Research and Treatment of Cancer (EORTC) is conducting research to better understand health-related quality of life (HRQoL) concerns among people living with rare cancers. Recently, researchers analyzed results from a group of 31 people with EHE from 11 different countries who participated in the study. The findings showed that pain–and the […]
Exploring Eribulin as a Potential Treatment Option for EHE
Prior research has shown that a class of medications called microtubule inhibitors may be effective at controlling the growth of EHE tumors. Recently, researchers conducted a phase 2 study to test whether the microtubule inhibitor eribulin is a safe and effective way to treat patients whose tumors continued to grow after prior treatment. Six (6) […]
EHE Foundation Welcomes Two Leading Sarcoma Experts to Its Scientific & Medical Advisory Board
EHE Foundation is pleased to announce the appointment of two distinguished physician-scientists to its Scientific & Medical Advisory Board: Nam Quoc Bui, MD, and Benjamin A. Nacev, MD, PhD. Their expertise in sarcoma medical oncology and translational research will greatly strengthen the Foundation’s advisory capacity as we work to accelerate progress in understanding and treating […]
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.
Immunotherapy: how it works and its role in the treatment of EHE
Jane Gutkovich will go over some basic principles of various types of immunotherapy, available predictive markers to patients response, and current knowledge of immunotherapy efficacy in EHE. Session Recording
The EHE Foundation Funds Fellowship Travel Grants
In June, the EHE Foundation provided two Fellowship Travel Grants supporting young investigators’ participation in a workshop entitled “YAP/TAZ and TEAD: At the Crossroads of Cancer.” The workshop is hosted annually by the Telluride Science Research Center (TSRC) and this year was co-led by notable EHE researchers and advocates – John Lamar, PhD, Albany Medical […]
An important message from Jenni Kovach, President, The EHE Foundation Board of Directors
I am writing today to share an organizational change to The EHE Foundation. After four years as a part-time contractor, Medha Deoras-Sutliff has ended her engagement with the foundation to pursue other opportunities. Medha will continue to provide her services to the foundation until the end of November to ensure a smooth transition. Medha came […]