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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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.

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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.

MORE ABOUT THE EHE PATIENT REGISTRY

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

Upcoming Foundation Events

10 - 11 Apr

SAVE THE DATE: EHE 360 Global Patient Conference

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Latest EHE News, Events and Research

The EHE Foundation and NORD® Launch Natural History Study of Epithelioid Hemangioendothelioma (EHE)

By The EHE Foundation | June 13, 2023

This research study is open to participants worldwide to advance understanding and treatments for epithelioid hemangioendothelioma (EHE), an ultra-rare vascular sarcoma. Hobart, Wisconsin. June 13, 2023 — The EHE Foundation and the National Organization for Rare Disorders (NORD®) have launched a global patient registry study to research epithelioid hemangioendothelioma (EHE), an ultra-rare vascular sarcoma for […]

EHE Research Grants – Your Support Makes a Big Impact

By The EHE Foundation | June 7, 2023

Lamar Lab at Albany Medical College Advancing EHE Research The EHE community is fortunate to have Dr. John Lamar, PhD, Associate Professor in the Department of Molecular and Cellular Physiology at Albany Medical College, and his team, working to advance our mission to find effective treatments for EHE. Dr. Lamar’s lab, the ‘Lamar Lab’, has […]

TEAD Talk – The Pursuit of a Treatment and Cure for EHE

By The EHE Foundation | May 23, 2023

Watch David Casimir, PhD, JD as he provides a patient-level presentation addressing the questions: What is the Hippo pathway and TEAD? How do they relate to EHE? How are they being used to develop EHE treatments? How do these treatments move from the laboratory, through clinical trials, to patient care? Session Recording and Slides Click […]

EHE 360 - Empowering Patients - 2023 Global Patient Conference

2023 EHE 360 EMPOWERING PATIENTS Global Patient Conference

By The EHE Foundation | April 29, 2023

Held on April 15, 2023, during EHE Awareness Month, the annual EHE 360 EMPOWERING PATIENTS 2023 Global Patient Conference featured an international group of clinicians and researchers presenting the latest clinical and research developments in epithelioid hemangioendothelioma (EHE). This virtual conference left EHE patients and families, doctors, researchers, and advocates empowered with a broader understanding of EHE […]

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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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 […]

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 […]

EHE Community Connections for Caregivers: Anticipatory Grief

By The EHE Foundation | September 9, 2024

As a caregiver, it can be hard to not think about the future and what it may or may not hold. In doing so, it is common for caregivers to experience anticipatory grief, in which we mourn the loss of our loved one while they are still here as well as grieve the future that […]