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 […]

Kylar K

By Maggie Cameron | July 17, 2026

Taz and Terry Kelly’s Story of Loving Kylar Through Their EHE Journey Taz and Terry‘s only child, Kylar, was diagnosed with EHE in the fall of 2024 at just 21 years old. What followed was seven months of hospital stays, hard-won recoveries, and devastating setbacks. This is their story of loving and losing Kylar, and […]

ADCs–Unlocking Future Treatment Advances for EHE

By Kristianne Oristian, PhD | June 25, 2026

Why this matters for people with EHE For people living with EHE, finding an effective treatment and understanding who best benefits from treatments is one of the greatest challenges of this disease. Traditional chemotherapy is often ineffective for EHE, and the search for more effective treatment options is central to our mission at the EHE […]

A Powerful Community Gathering at the 2026 EHE 360 Global Conference

By EHE Foundation | June 23, 2026

The EHE Foundation hosted the sixth annual virtual convening of the EHE 360 Global Conference on April 31 – May 1, 2026. The conference brought together patients, caregivers, clinicians, researchers, regulators, and industry partners from around the world to promote education, broaden research collaborations, and advance therapeutic development for epithelioid hemangioendothelioma (EHE), an ultra-rare sarcoma. […]