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.

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a Virtual Event

April 10 - 11, 2025

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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.

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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.

MORE ABOUT THE EHE PATIENT REGISTRY

EMPOWER YOURSELF WITH KNOWLEDGE

Upcoming Foundation Events

10 - 11 Apr

EHE 360 Global Patient Conference

Thursday

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13 Apr

EHE Meetup in the Washington, D.C. Area

Sunday, The Bethesdan Hotel

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Consensus Paper on EHE Management

The Consensus Paper is a powerful, EHE-specific resource for patients, caregivers, and medical professionals that answers critical questions regarding diagnosis and treatment. Patients are encouraged to read it to better understand EHE and facilitate more informed discussions and decision-making with medical teams.

EHE CONSENSUS PAPER

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Latest EHE News, Events and Research

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

By The 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 The 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 Rare Sarcoma Beyond Hope

By The EHE Foundation | March 29, 2024

Under the umbrella of the Connective Tissue Oncology Society (CTOS), the 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 establish a consortium, PUSH, to collect and make the best use of all available evidence to facilitate the development of […]

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 […]

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 […]

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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Highlights from CTOS 2024

By The EHE Foundation | December 30, 2024

In November, Denise Robinson, Executive Director and Director of Research attended the CTOS 2024 Annual Meeting in San Diego, CA. The Connective Tissue Oncology Society (CTOS), is a professional medical organization that brings together multi-disciplinary clinician-scientists, translational researchers, and advocates from all over the world to advance the treatment of sarcomas. Many of the world’s […]