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 Community Connections for Caregivers: I’m part of the story too.

By Maggie Cameron | May 24, 2024

When a person receives a diagnosis, much of the focus is aimed at the individual, when in fact every aspect of the caregiver’s life is also impacted. Caregivers are a huge part of the story but are often overlooked and undersupported, which leaves them feeling isolated and unseen. Join veteran caregiver and Caregiver Advocate, Allison Breininger, […]

Help is on the way! Non-pharmacologic Management of Cancer Pain

By EHE Foundation | April 16, 2024

Join Dr. Tamara Vesel, Chief of Palliative Care at Tufts Medical Center in Boston, MA, and her Research Assistant, MD/MPH candidate, Abigail Lebowitz for an interactive session exploring the topic of non-pharmacological management of cancer pain. Dr. Vesel is a globally recognized palliative care specialist with expertise in pain and symptom management, integrative medicine, clinical […]

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 […]

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 […]

Exploring Eribulin as a Potential Treatment Option for EHE

By Kristianne Oristian, PhD | February 10, 2026

Prior research has shown that a class of medications called microtubule inhibitors may be effective at controlling the growth of EHE tumors. Recently, researchers conducted a phase 2 study to test whether the microtubule inhibitor eribulin is a safe and effective way to treat patients whose tumors continued to grow after prior treatment. Six (6) […]

EHE Foundation Welcomes Two Leading Sarcoma Experts to Its Scientific & Medical Advisory Board

By EHE Foundation | February 8, 2026

EHE Foundation is pleased to announce the appointment of two distinguished physician-scientists to its Scientific & Medical Advisory Board: Nam Quoc Bui, MD, and Benjamin A. Nacev, MD, PhD. Their expertise in sarcoma medical oncology and translational research will greatly strengthen the Foundation’s advisory capacity as we work to accelerate progress in understanding and treating […]