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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.
2022 EHE Research Grant Cycle Update
A pillar of The EHE Foundation’s mission is to seek treatments and a cure for EHE by pursuing scientific research, and one way we do this is by funding the most impactful EHE research projects possible. To support our mission, the Foundation issues a call for research grant proposals each year from the global scientific […]
The EHE Foundation Advisory Board Annual Meeting
The EHE Foundation’s Advisory (Ad) Board met with the Foundation’s research team in June for their annual meeting. The Ad Board is composed of nine renowned clinicians and researchers who generously give their time and talents to advise The Foundation, in addition to the countless hours they spend during their ‘day jobs’ with patients, research […]
Continued Discussion on Integrating Cancer Identity Into the Self
Drs. Vesel and Baechler facilitated our very first Community Connections event on May 14th. The topic was, “Who am I now? Integrating the cancer identity into the self.” Attendees discussed their own experiences with their diagnosis and how they’ve incorporated EHE into their identities. This will be a continuation of that topic and more! Dr. Vesel is […]