One-in-a-million people are living with EHE worldwide.

Our mission is to find treatments and a cure for epithelioid hemangioendothelioma (EHE) by advancing research and driving collaboration among patients, researchers, and clinicians.

We envision a world where Epithelioid Hemangioendothelioma (EHE) is easily diagnosed and treatable. Join our dedicated community by subscribing to our emails.

Patient-Powered EHE Research

EHE Biobank

Patients are the key to finding new treatments for EHE! Researchers need tumor tissue and fluid from EHE patients to understand disease progression and speed the development of new drugs and therapies.

Patient-Powered EHE Research

EHE Global Patient Registry

The EHE Global Patient Registry empowers people with Epithelioid Hemangioendothelioma (EHE) to join together to improve our understanding of this ultra-rare sarcoma. We need every EHE patient to join this critical tool used to support researchers searching for treatments and a cure for EHE.

Latest EHE News, Events and Research

What Happened at ASCO? EHE Update with Jane Gutkovich

By EHE Foundation | June 23, 2022

Jane is one of the founders of The EHE Foundation, and currently in the role of distinguished Board Member Emeritus. In this role, Jane works strategically with us to continue to support patients worldwide and recruit researchers to EHE. Jane recently attended the 2022 American Society of Clinical Oncology Meeting held annually in Chicago, IL. […]

The Pledge: Edition 28, Q1 – Jan-Mar, 2022

By EHE Foundation | June 8, 2022

Together, the US, UK, and Australia EHE foundations team up to strengthen the force against EHE. This group provides a quarterly update, which is led by the UK and includes research news, patient and fundraising stories, and much more! Click here to view the most recent edition of our online EHE newsletter, The Pledge.

EHE Biobank: Patients Powering Research

By EHE Foundation | June 7, 2022

You didn’t choose to have cancer, but you can make a difference in how the world fights it. Join Patty Cogswell, EHE Biobank Coordinator, in an informal, interactive conversation on the questions, challenges and benefits of donating tissue and fluids to the EHE Biobank. Learn how YOUR contributions can directly power research and help us […]

Who am I now? Integrating the cancer identity into the self.

By EHE Foundation | June 7, 2022

You are invited to the EHE Community Connections session on Saturday, May 14th, at 11:00 AM Eastern Time (US). Dr. Tamara Vesel and Dr. Maeve Baechler will be facilitating the discussion and exploring questions like Why is it important to contemplate on identify after the cancer diagnosis. How does the issue of identity relates to symptoms during cancer treatment? Ups and down of resisting versus incorporating cancer diagnosis into one’s life.

Scanxiety

By Maggie Cameron | May 23, 2022

What is scanxiety? Scanxiety describes the apprehension felt by people with cancer as they wait for their next scan. It’s a form of anticipatory anxiety. Scans are like emotional roulette. You’re trying really hard not to worry about the unknown, but your body has other plans. Recognizing the Signs of Scanxiety Symptoms of scanxiety vary […]

Planned Ikena Oncology Clinical Trial to Include EHE Patients

By EHE Foundation | January 31, 2022

The planned Phase 1 clinical trial includes patients with tumor types with a high frequency of Hippo pathway alterations, including NF2-deficient malignant mesothelioma and some soft tissue sarcomas with YAP/TAZ genetic fusions, including Epithelioid Hemangioendothelioma (EHE), a rare form of soft tissue sarcoma that has a significant unmet medical need with no currently approved therapy […]

Science Saturday: EHE Research Progress & Momentum

By EHE Foundation | January 20, 2026

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

By EHE Foundation | January 20, 2026

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

By EHE Foundation | December 17, 2025

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 […]