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.

Patient Services

Whether you are newly diagnosed or have been living with EHE for a while, you are not alone. The EHE Community is stronger together and includes patients, their families and friends, and the many specialists working tirelessly to find treatments and a cure.

Visit Patient Services for resources, education, and support for patients and their caregivers.

Latest EHE News, Events and Research

TEAD Talk with David Casimir

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 […]

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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 […]

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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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The Pledge Q4, 2022

The Pledge: Edition 31, Q4 – October-December, 2022

By The EHE Foundation | February 28, 2023

Together, the US, UK, and Australia EHE foundations team up to strengthen the force against EHE. This group provides a quarterly update, which is led by the UK and includes 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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Patient from Hell Podcast

Podcast Shares a Challenging Diagnostic Journey

By The EHE Foundation | February 7, 2023

Jane Gutkovich, a founding member of The EHE Foundation and fierce EHE advocate, was a guest on World Cancer Day 2023 in the podcast Patient from Hell. Jane speaks with Samira Daswani in an episode entitled “Navigating Uncertainty, Making Decisions in the Absence of Data, Advocating & Caregiving”. Jane’s journey resonates with many people who […]

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Good Vibes for McKenna Raised $25K at Fundraiser

Good Vibes for McKenna, A Celebration Benefiting Cancer Research

By The EHE Foundation | January 27, 2023

Thanks to “Good Vibes for McKenna, A Celebration Benefiting Cancer Research” for hosting an EXTRAORDINARY two-day event held January 21st and 22nd in Fort Myers, Florida. We truly appreciate their $25,000 donation to The EHE Foundation to support EHE research and for creating much needed EHE awareness! The event featured a fine dining experience and […]

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Community Connections for Caregivers: Anticipatory Grief

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 […]

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Denise Robinson, EHE Foundation Executive Director

The EHE Foundation Appoints New Executive Director

By The EHE Foundation | August 14, 2024

On behalf of the Board of Directors of The EHE Foundation, Jenni Kovach, Board President has announced the appointment of Denise Robinson as the new Executive Director for the Foundation.  Like many people, Denise had not heard of EHE until her friend was diagnosed in 2017 with an aggressive form of the disease. She soon […]

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The Pledge: Edition 37, Q2 - April-June, 2024

The Pledge: Edition 37, Q2 – April-June, 2024

By The EHE Foundation | August 8, 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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