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

EHE Advocates at the ESMO Sarcoma and Rare Cancers Congress 2024

By EHE Foundation | March 29, 2024

In March Denise Robinson, Director of Research for The EHE Foundation attended the ESMO Sarcoma and Rare Cancers Congres 2024 in Lugano, Switzerland. This congress brought together world-renowned experts including researchers and clinicians, to present and discuss the latest advancements in the treatment of sarcomas and rare cancers.  Topics ranged from the role of immune […]

PUSH Project: Pushing Ultra-Rare Sarcoma Beyond Hope

By EHE Foundation | March 29, 2024

Under the umbrella of the Connective Tissue Oncology Society (CTOS) Ultra-rare Sarcoma Working Group, a broad group representing the global sarcoma community, including clinicians, scientists, patient advocates, and non-profit organizations, has come together to form PUSH (Pushing Ultra-Rare Sarcomas Beyond Hope). This consortium has been established to collect and make the best use of all […]

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 […]

Advocacy in Action: ESMO Sarcoma and Rare Cancers Congress & EHE Research Meeting

By Maggie Cameron | April 8, 2026

In March, EHE Foundation was represented at two important meetings in Europe focused on sarcoma, rare cancers, and EHE research. These gatherings were invaluable opportunities to connect with clinicians, researchers, and fellow advocates working to improve care, deepen understanding, and advance progress for people affected by EHE. Executive Director Denise Robinson attended on behalf of […]

Across Borders and Histologies: Rethinking Endpoints for Vascular Sarcoma Trials

By Kristianne Oristian, PhD | April 8, 2026

Following the publication of results from a phase 2 study of eribulin in two vascular sarcomas, angiosarcoma and EHE, Dr. Tom Chen of National Taiwan University College of Medicine shared commentary in Clinical Cancer Research. He praised the investigators for their collaborative study while also pointing to important considerations for future research. Although angiosarcoma and […]

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 […]