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

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 […]

EHE in Canada: what a national study tells us

By EHE Foundation | December 17, 2025

A recent study published in the European Journal of Cancer represents the largest collection of data from people with EHE in Canada. Researchers found that EHE can behave very differently from person to person—about one-third of patients were diagnosed by chance and did not need immediate treatment, while others had more aggressive disease. About half […]

Pulmonary EHE: a case report and review of literature

By EHE Foundation | December 17, 2025

In a recent issue of AME Case Reports, a team led by Dr. Clifford Atuiri describes a case of pulmonary epithelioid hemangioendothelioma (EHE) and places it within the broader understanding of the disease. The authors note that EHE in the lungs can be difficult to diagnose because symptoms and imaging often resemble more common lung […]

Exploring a treatment option for hepatic EHE: subsegmental bland embolization

By EHE Foundation | December 17, 2025

A recent study published in Cancer Control describes a treatment approach for hepatic (liver) EHE called subsegmental bland embolization, which blocks blood flow to individual tumors. In three patients with multiple liver tumors, most treated tumors shrank significantly, and the disease was initially controlled in all patients. The procedure was well tolerated, with no serious […]

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 […]

The Pledge: Edition 27, Q4 – Oct-Dec, 2021

By EHE Foundation | January 25, 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.