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 24, Q1 – Jan-Mar, 2021

By EHE Foundation | May 24, 2021

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.

The Importance of Biobanking

By EHE Foundation | May 17, 2021

Biobanking is a brand-new endeavor for us at The EHE Foundation. Researchers retain frozen and stored tissue and biological samples from surgeries, which usually remains within the institution where the procedure takes place. Today, biobanking is a game-changer for rare disease and patient-led organizations like ours. Biobanks accelerate research by safe-guarding high-quality, donated tissue samples […]

Researchers Engineer Much-Needed Mouse Model of a Rare Vascular Sarcoma

By EHE Foundation | April 20, 2021

Dr. Rubin used a novel approach to target the gene fusion that causes epithelioid hemgioendothelioma, engineering a novel, first-of-its-kind mouse model of the disease, which will help advance studies to identify new treatments. Click here to read the full article. Sharing exciting news highlighting Dr. Brian Rubin’s research at the Lerner Research Institute at Cleveland […]

Leah Heinrich Participates on Scientific Peer Review Panel

By EHE Foundation | March 2, 2021

For Immediate Press Release:  SCIENTIFIC PEER REVIEW OF CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS’ RARE CANCERS RESEARCH PROGRAM FOR THE DEPARTMENT OF DEFENSE The Congressionally Directed Medical Research Programs’ (CDMRP), Rare Cancers Research Program (RCRP) consumer advocate Leah Heinrich recently participated in the evaluation of research applications submitted to the RCRP. Leahwas nominated for participation in […]

The Pledge: Edition 23, Q4 – Oct-Dec, 2020

By EHE Foundation | February 17, 2021

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.

Stay up to Date on EHE by Reading The Pledge: Edition 22, Q3 – Jul-Sep, 2020

By EHE Foundation | November 10, 2020

Click here to read the Pledge: Edition 20, Q3 – Jul-Sep, 2020

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. […]