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

EHE patients’ voices inform paper on sirolimus for the treatment of EHE.

By EHE Foundation | March 15, 2024

“The patient perspective on sirolimus for epithelioid hemangioendothelioma (EHE): results of a community survey highlighting the importance of equitable access to treatments” was published on February 25, 2024, in the scientific journal Frontiers in Oncology. In early 2023, EHE patient advocates surveyed the global EHE community to gain patients’ perspectives on sirolimus to generate information […]

Science Saturday: Patient-Powered EHE Research

By EHE Foundation | March 13, 2024

On Saturday, February 24, 2024, Denise Robinson, Director of Research provided an update to the global EHE community focused on ‘Patient-Powered EHE Research’. Denise highlighted research projects The EHE Foundation is funding and supporting through resources, and projects initiated by the foundation including the EHE Global Patient Registry and EHE Biobank. Denise highlights progress made […]

Welcome New Board Member Guy Weinberg, MD

By EHE Foundation | March 11, 2024

The EHE Foundation is delighted to announce that Guy Weinberg, MD, has joined our Board of Directors. Internationally recognized in the field of anesthesiology, he is, importantly, the father of an EHE patient, bringing a multifaceted expert and personal perspective to The EHE Foundation, helping us advance our mission to find effective treatments for this […]

Rare Disease Day 2024

By EHE Foundation | March 8, 2024

Rare Disease Day was February 29th, a very special rare day! We asked our community to help us build EHE awareness by submitting their EHE stories so that we could share them on our social media platforms and website to shine a light on EHE and rare diseases! Throughout the month, we shared the stories […]

“Shakedown for Steve” Gives $20,000 in Memory of Steve Walsh, Jr.

By EHE Foundation | March 4, 2024

What started as a GoFundMe page to help Steve Walsh with EHE-related medical expenses turned into a memorial as he lost his 10-month battle with EHE on September 22, 2023. From the Southside of Chicago, Steve is remembered for his love of life, sports, and the people closest to him. His sister, Jessica shared, “On […]

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.

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. […]

ASCO 2026: Conquering Cancer on the Global Stage

By EHE Foundation | June 4, 2026

What an amazing ASCO 2026 for so many people affected by cancer. The ASCO Annual Meeting in Chicago brought tens of thousands of global oncology professionals together with the same goal – to change lives. EHE Foundation Executive Director Denise Robinson was there to represent the EHE community, raise awareness of patients’ needs, and connect […]