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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.
Welcome New Board Member Guy Weinberg, MD
The EHE Foundation is delighted to announce that Guy Weinberg, MD, has joined our Board of Directors. Internationally recognized in the field of anesthesiology, he is, importantly, the father of an EHE patient, bringing a multifaceted expert and personal perspective to The EHE Foundation, helping us advance our mission to find effective treatments for this […]
Rare Disease Day 2024
Rare Disease Day was February 29th, a very special rare day! We asked our community to help us build EHE awareness by submitting their EHE stories so that we could share them on our social media platforms and website to shine a light on EHE and rare diseases! Throughout the month, we shared the stories […]
“Shakedown for Steve” Gives $20,000 in Memory of Steve Walsh, Jr.
What started as a GoFundMe page to help Steve Walsh with EHE-related medical expenses turned into a memorial as he lost his 10-month battle with EHE on September 22, 2023. From the Southside of Chicago, Steve is remembered for his love of life, sports, and the people closest to him. His sister, Jessica shared, “On […]