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.

Patient-Powered Research

Patients Powering Research for Epithelioid Hemangioendothelioma

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.

EHE Biobank

Patients are the key to finding new treatments for EHE! Researchers need tumor tissue, blood and fluid from EHE patients to understand disease progression and speed development of new drugs and therapies.

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. 

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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The Pledge (Q4 2023)

The Pledge: Edition 35, Q4 – October-December, 2023

By The EHE Foundation | February 6, 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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Science Saturday: Patient-Powered Research

Science Saturday: Patient-Powered Research

By The EHE Foundation | January 31, 2024

Join The EHE Foundation’s Director of Research, Denise Robinson, as she explains the power of patients to advance research into EHE. What is patient-powered research, why does it matter, and how can you contribute? Join us to learn what’s happening in EHE research and the pivotal role you play in advancing our understanding of this […]

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IK-930 Orphan Drug Designation

IK-930 Receives Orphan Drug Designation for EHE

By The EHE Foundation | January 10, 2024

Ikena Oncology has shared that on December 14th, 2023, the Food and Drug Administration (FDA) granted Orphan Drug Designation to IK-930 for the treatment of epithelioid hemangioendothelioma (EHE). We are excited about this designation following initial positive data from the IK-930 Phase I clinical trial published in Ikena’s November 9th press release. What does this […]

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