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.

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.

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

By The 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 […]

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Science Saturday: Patient-Powered EHE Research

Science Saturday: Patient-Powered EHE Research

By The 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 […]

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Guy Weinberg, MD

Welcome New Board Member Guy Weinberg, MD

By The 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 […]

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Rare Disease Day - February 29, 2024

Rare Disease Day 2024

By The 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 […]

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Shakedown for Steve raised $20k for EHE research!

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

By The 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 […]

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The Pledge (Q4 2023)

The Pledge: Edition 35, Q4 – October-December, 2023

By The 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.

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ASCO 2025 Recap

ASCO 2025 Recap: Advancing Research to Conquer Cancer

By The EHE Foundation | June 8, 2025

Denise Robinson, EHE Foundation Executive Director and Director of Research, had the privilege of representing the Foundation at the 2025 ASCO Annual Meeting in Chicago, where tens of thousands of global oncology professionals gathered to share knowledge with a purposeful commitment to conquer cancer.  The American Society of Clinical Oncology (ASCO) is the world’s leading […]

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The EHE Foundation Welcomes Two New Board Members

The EHE Foundation Welcomes Two New Board Members

By The EHE Foundation | June 5, 2025

The EHE Foundation is proud to announce the addition of two new members to our Board of Directors: Hollace D. Leppert, DO, FACOI, and Krista Sheeley, BSN, RN. Both bring extensive healthcare experience, leadership, and passion to our mission. We are excited to welcome them to the EHE Foundation and look forward to their insight, […]

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2025 EHE 360 Global Patient Conference

Celebrating Progress and Hope: 2025 EHE 360 Global Patient Conference Recap

By The EHE Foundation | June 3, 2025

The EHE Foundation is proud to celebrate the success of the 2025 EHE 360 Global Patient Conference, a truly transformative event that brought together the global EHE community for learning, collaboration, and connection. Over 200 participants from a record 25 countries were united by a common mission to drive progress in EHE research, treatment, and […]

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