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.

With the generosity, heart, and determination of the EHE community and the EHE Foundation Board of Directors, we raised more than $155,000 — and counting — for EHE Research this Giving Tuesday! In a world with so many urgent needs, we are profoundly grateful for how this community continues to show up for one another to advance our mission of finding treatments and a cure for EHE. Thank you!

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

Kristianne Oristian, PhD

The EHE Foundation Welcomes Kristianne Oristian, PhD, as Director of Research & Engagement

By EHE Foundation | December 9, 2025

The EHE Foundation is proud to announce the appointment of Kristianne (“Kristi”) Oristian, PhD, as our new Director of Research & Engagement. In this role, Kristi will work closely with Executive Director Denise Robinson, who previously led both organizational and research strategy, to advance the Foundation’s mission and strengthen our growing impact in the global […]

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EHE Foundation at CTOS 2025

Advancing EHE Research on the Global Stage: Highlights from CTOS 2025

By EHE Foundation | December 5, 2025

The EHE Foundation had the privilege of attending the CTOS 2025 Annual Meeting, held November 12-15, in Boca Raton, Florida. The Connective Tissue Oncology Society (CTOS) is a global, professional medical organization of clinician-scientists, translational researchers, and patient advocates united by a single goal: advancing treatment of sarcomas.   For the EHE community, this annual gathering […]

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The Pledge: Edition 42 - Q3 - July-September 2025

The Pledge: Edition 42, Q3 – July-September, 2025

By Maggie Cameron | November 11, 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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Drs. Claudia Giani and Anna Maria Frezza

EHE Stabilization with Sirolimus: Results From POEM, a Prospective Multicentric Observational Study

By EHE Foundation | November 6, 2025

Drs. Claudia Giani, Anna Maria Frezza, Silvia Stacchiotti, and colleagues from the Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy, and Royal Marsden Hospital, London, UK, presented results from POEM: a prospective observational study on Epithelioid Haemangioendothelioma at ESMO Congress 2025. The data presented included 57 consecutive molecularly confirmed EHE patients who entered the study, […]

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Jason Hanna, PhD from the Hanna Lab at Purdue University

Hanna Lab at Purdue University: ‘When cells in the body stop following the rules, cancer can take hold.’

By EHE Foundation | October 14, 2025

You met Jason Hanna, PhD, at the 2025 EHE Global Patient Conference, where he highlighted work his lab is undertaking in EHE. We are thrilled to share a recent publication in Molecular Oncology from the Hanna Lab at Purdue University, highlighting their findings from a study focused on the YAP1-TFE3 subtype of EHE.  The YAP1-TFE3 […]

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Tanas Lab at the University of Iowa

Exciting Progress in EHE Research – Powered by Patients

By EHE Foundation | October 10, 2025

We are thrilled to share a new publication, “EHE cell cultures are a platform for mechanistic and therapeutic investigation,” made possible by a partnership between the University of Iowa and the EHE Foundation. Under the leadership of Dr. Munir Tanas, Nicholas Scalora, PhD, and colleagues in the Tanas Lab sought to develop long-term EHE cell […]

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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 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 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 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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