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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.
Running 100 Miles for EHE
Jimmy Crook started the 100 mile challenge many years ago, while he was deployed to Afghanistan as a way to pass time and get people motivated through the tough holiday month of December. It has morphed into a nationwide group on Facebook (#Run4) that raises money for charity, encourages others on their fitness journey, and […]
2nd Annual EHE Virtual 5K Run/Walk
Registration for this event is over, but if you are interested in purchasing EHE/Just Live merchandise, please contact us at [email protected]. For up-to-date information about this event, visit our Facebook event page: https://www.facebook.com/events/236969163428782 . We encourage you to upload pictures wearing your race shirt. The pictures can be taken before, during, or after the 5K. Your […]
Poker Tournament in Memory of Brian Frank Raises $11,000
Earlier this month, Angela Osborn, along with numerous family and friends, gathered for a night of poker in Washington in order to honor her late brother Brian Frank. Along with the poker tournament, a silent auction was held, T-shirts and sweatshirts featuring Brian’s initials and birthdate were sold, and at the end of the evening, a staggering $11,000 […]