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.

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: 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.

Welcome New Board Member John McFadden, Ph.D., CRNA, APRN

By EHE Foundation | November 17, 2023

The EHE Foundation was founded by patients, for patients. Continuing that tradition, we aredelighted to announce that EHE patient John McFadden, Ph.D., CRNA, APRN, has joined ourBoard of Directors. With more than 35 years of experience in health care, Dr. McFadden has held positions as anurse executive, hospital and university program accreditation surveyor, faculty member, […]

EHE Foundation Awards $335,000 in New Research Grants to Advance Progress in EHE

By EHE Foundation | March 16, 2026

The EHE Foundation is proud to announce $335,000 in funding through the 2026 EHE Foundation Research Grants Program to support two innovative research projects in epithelioid hemangioendothelioma (EHE). Selected for their scientific merit, potential impact, and clinical relevance, these projects address two important priorities in EHE research: biomarker development and new therapeutic approaches. Together, they […]

The Pledge: Edition 43, Q4 – October-December, 2025

By EHE Foundation | February 15, 2026

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 the online EHE newsletter, The Pledge.

Understanding Quality of Life for People Living With EHE

By Kristianne Oristian, PhD | February 10, 2026

The European Organisation of Research and Treatment of Cancer (EORTC) is conducting research to better understand health-related quality of life (HRQoL) concerns among people living with rare cancers. Recently, researchers analyzed results from a group of 31 people with EHE from 11 different countries who participated in the study. The findings showed that pain–and the […]