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

The Pledge: Edition 35, Q4 – October-December, 2023

By EHE Foundation | February 6, 2024

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 our online EHE newsletter, The Pledge.

Science Saturday: Patient-Powered Research

By EHE Foundation | January 31, 2024

Join The EHE Foundation’s Director of Research, Denise Robinson, as she explains the power of patients to advance research into EHE. What is patient-powered research, why does it matter, and how can you contribute? Join us to learn what’s happening in EHE research and the pivotal role you play in advancing our understanding of this […]

IK-930 Receives Orphan Drug Designation for EHE

By EHE Foundation | January 10, 2024

Ikena Oncology has shared that on December 14th, 2023, the Food and Drug Administration (FDA) granted Orphan Drug Designation to IK-930 for the treatment of epithelioid hemangioendothelioma (EHE). We are excited about this designation following initial positive data from the IK-930 Phase I clinical trial published in Ikena’s November 9th press release. What does this […]

Giving Tuesday 2023 Raises over $160k for EHE Research

By EHE Foundation | December 15, 2023

Thank you! Together, we raised more than $160,000 to fund critically needed research into epithelioid hemangioendothelioma (EHE). Rare cancers, like EHE, lack sufficient governmental and pharmaceutical funding sources available for more common cancers. Your donations support our work to level the playing field. A special thanks to: Thank you for joining us in our fight […]

2023 EHE Foundation Research Grant Awards Announcement

By EHE Foundation | December 12, 2023

The EHE Foundation awards research grants to advance our mission to find treatments and a cure for EHE. With the guidance of our Research Committee, Advisory Board, and expert reviewers, we are pleased to announce the research grants awarded in 2023:   Ajaybabu Pobbati, PhD, Cleveland Clinic Lerner Research Institute Harnessing FDA-approved drugs to gain mechanistic […]

The Pledge: Edition 34, Q3 – July-September, 2023

By EHE Foundation | December 11, 2023

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 our online EHE newsletter, The Pledge.

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 […]