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 […]

2nd Annual EHE Virtual 5K Run/Walk

By Maggie Cameron | February 19, 2017

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

By EHE Foundation | October 31, 2016

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 […]

Smoothie King Raises Money in Memory of Mandy O’Connor

By EHE Foundation | October 30, 2016

Smoothie King in York, Pennsylvania, held its second fundraiser in memory of Mandy O’Connor on October 13. Sean and Nicky Krebs, Smoothie King franchisees and close friends of Mandy and Devin’s, once again donated 50 percent of their sales on what would have been Mandy’s 33rd birthday. Mandy died due to EHE on April 5, […]