One-in-a-million people are living with EHE worldwide.

Our mission is to find treatments and a cure for this rare cancer by advancing research and driving collaboration between 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

Guy Weinberg, MD

Uniting for a Cure: A New Chapter in the Fight Against EHE

By The EHE Foundation | October 8, 2025

FOR IMMEDIATE RELEASE Hobart, WI – October 9, 2025 – The Center for Research and Analysis of VAscular Tumors (CRAVAT) Foundation has donated its resources to The EHE Foundation in a powerful alignment of vision and commitment to the people affected by epithelioid hemangioendothelioma (EHE) and the EHE scientific community.  Founded in 2015 by Guy […]

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Lamar Lab at Albany Medical College

New Study Uncovers Unexpected Role for AMPK in EHE

By The EHE Foundation | September 22, 2025

A project funded by the EHE Foundation, the EHE Rare Cancer Charity (UK), and the EHE Rare Cancer Foundation Australia, and led by Dr. Ryan Kanai in the Lamar Lab, was recently published in Cancers, revealing a surprising new role for AMPK in controlling the growth of EHE cells.  Dr. Kanai set out to find […]

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EHE Advocates Unite to Navigate Complexities of Drug Development

By The EHE Foundation | September 19, 2025

We are thrilled to share a new publication that includes participation of  EHE advocacy organizations: “How to foster new treatment development in ultra-rare tumours? Joint EMA-EORTC multi-stakeholder workshops on ultra-rare sarcomas as a model for rare cancers.”  Leaders of the EHE Rare Cancer Charity (UK), the EHE Foundation, and EHE ITALIA Associazione Non Solo Laura […]

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Lamar Lab at Albany Medical College

Preclinical Evidence Supporting the Therapeutic Potential of Statins in EHE

By The EHE Foundation | September 18, 2025

In 2022, the EHE Foundation funded the Lamar Lab’s project entitled ‘Use of Pre-clinical EHE Models to Identify Druggable Pathways to Treat EHE,’ with the goal of identifying FDA-approved drugs that can be repurposed to treat EHE. By looking for drugs that are already FDA-approved, ideally, positive pre-clinical findings could be more rapidly translated to […]

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Andrei Ivanescu, Denise Robinson, and Hugh Leonard - Global EHE Advocates

EHE Advocates Join Forces to Fund Multi-National Research Expansion

By The EHE Foundation | September 16, 2025

As partners in EHE research to find better treatments for people with EHE, the EHE Rare Cancer Charity (UK), the EHE Foundation, and EHE ITALIA Associazione Non Solo Laura ODV are excited to share the expansion of the multi-national collaborative research project “The generation and characterization of patient-derived models of EHE to assess the activity […]

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The Pledge: Edition 41, Q2 - April-June, 2025

The Pledge: Edition 41, Q2 – April-June, 2025

By The EHE Foundation | August 21, 2025

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.

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SARC Talk featuring Denise Robinson and Dr. Scott Okuno

SARC Talk Podcast Featuring EHE Research & Patient Advocacy

By The EHE Foundation | March 25, 2023

In March Denise Robinson, our Director of Research joined Dr. Scott Okuno, Chief Medical Officer for SARC (Sarcoma Alliance for Research through Collaboration) to talk about EHE research and patient advocacy. Their discussion beautifully lays out the challenges of facilitating research in the ultra-rare disease landscape. Denise and Dr. Okuno also talked about the growth […]

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The Pledge Q4, 2022

The Pledge: Edition 31, Q4 – October-December, 2022

By The EHE Foundation | February 28, 2023

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.

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Patient from Hell Podcast

Podcast Shares a Challenging Diagnostic Journey

By The EHE Foundation | February 7, 2023

Jane Gutkovich, a founding member of The EHE Foundation and fierce EHE advocate, was a guest on World Cancer Day 2023 in the podcast Patient from Hell. Jane speaks with Samira Daswani in an episode entitled “Navigating Uncertainty, Making Decisions in the Absence of Data, Advocating & Caregiving”. Jane’s journey resonates with many people who […]

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