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.

EHE Biobank

Patients Powering Research for EHE

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

Patients Powering Research for EHE

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.

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.

Latest EHE News, Events and Research

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

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, […]

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EHE Community Connections: Help is on the way! Non-pharmacologic Management of Cancer Pain

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 […]

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EHE Advocates at the ESMO Congress 2024

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 […]

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PUSH Project: Pushing Rare Sarcoma Beyond Hope

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 […]

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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 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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EHEF Scientific & Medical Advisory Board

Scientific & Medical Advisory Board Collaborates to Improve Outcomes for People Living with EHE

By The EHE Foundation | September 30, 2024

On September 10, 2024, The EHE Foundation held a virtual meeting of our Scientific & Medical Advisory Board (SMAB). The meeting aimed to welcome new members, review current research projects, and discuss future needs and goals to advance EHE research. The meeting began with a warm welcome to new members of the SMAB: Tom Chen, […]

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test tubes

GDF-15 Predicts Epithelioid Hemangioendothelioma Aggressiveness and is Down-regulated by Sirolimus Through ATF4/ATF5 Suppression

By The EHE Foundation | September 27, 2024

Drs. Silvia Stacchiotti, Sandro Pasquali, and Nadia Zaffaroni (IRCCS – INT, Milan, Italy) and colleagues published their promising findings in Clinical Cancer Research, September 16, 2024. This study, funded in part by The EHE Foundation in partnership with EHE Rare Cancer Charity (UK), aimed to assess the efficacy of sirolimus for the treatment of EHE […]

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Ajay Pobbati, PhD and Brian Rubin, MD, PhD at the Cleveland Clinic

Harnessing Cyclin-dependent Kinase Inhibitors to Gain Mechanistic Insight Into the Regulation of the TAZ-CAMTA1 Fusion Protein

By The EHE Foundation | September 23, 2024

Ajay Pobbati, PhD, Brian Rubin, MD, PhD, and colleagues at the Cleveland Clinic published their findings from the study “CDK9 inhibition by dinaciclib is a therapeutic vulnerability in epithelioid hemangioendothelioma” in Clinical Cancer Research, September 13, 2024. This study, funded in part by a grant from The EHE Foundation, provides a strong rationale for investigating […]

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