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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Cedric Gegel is an actor, director, and screenwriter based in the New York City area. Watch our candid conversation recorded live on Facebook, where we talk about his EHE diagnosis, treatment, and the impact his diagnosis has had on his life. There's even a sneak peek of his work!

Our Giving Tuesday total is a staggering $183,737 and counting! That's $87,237 in community donations and $96,500 contributed by our Board of Directors.

Let’s keep this momentum going! If you haven’t donated yet, it’s not too late—every dollar makes a difference.

We are overwhelmed with gratitude—not just for your incredible support on #GivingTuesday, but for standing with us every single day.

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Stephanie was diagnosed with epithelioid hemangioendothelioma (EHE) in her liver, lungs, spine, ribs, and femur. It's not uncommon for EHE patients to present with metastatic disease. Unlike other cancers, metastatic EHE is not always correlated with a poor prognosis.

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Very recently diagnosed with epithelioid hemangioendothelioma (EHE) Lindsey is now on a treatment plan of "watch and wait" also known as active surveillance. She talks about the support she has received from her community and the responsibility she feels to spread awareness and advocate for people living with EHE and those who will be diagnosed in the future.

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 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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Guy Weinberg, MD

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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Rare Disease Day - February 29, 2024

Rare Disease Day 2024

By The EHE Foundation | March 8, 2024

Rare Disease Day was February 29th, a very special rare day! We asked our community to help us build EHE awareness by submitting their EHE stories so that we could share them on our social media platforms and website to shine a light on EHE and rare diseases! Throughout the month, we shared the stories […]

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Shakedown for Steve raised $20k for EHE research!

“Shakedown for Steve” Gives $20,000 in Memory of Steve Walsh, Jr.

By The EHE Foundation | March 4, 2024

What started as a GoFundMe page to help Steve Walsh with EHE-related medical expenses turned into a memorial as he lost his 10-month battle with EHE on September 22, 2023. From the Southside of Chicago, Steve is remembered for his love of life, sports, and the people closest to him. His sister, Jessica shared, “On […]

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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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2024 Research Grant Awards

The EHE Foundation Announces Grant Funding of $307,400 to Advance Research and Find Treatments for EHE

By The EHE Foundation | November 20, 2024

We are pleased to announce The EHE Foundation’s 2024 Research Grants Program awards, totaling $307,400, as part of our ongoing commitment to advance our mission to find effective treatments and a cure for EHE. Made possible by 2023 Giving Tuesday gifts, these grants support novel translational research projects that aim to identify and accelerate the […]

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Donating vs. Fundraising

Making a Donation vs. Fundraising for The EHE Foundation: What’s the Difference?

By The EHE Foundation | November 4, 2024

At The EHE Foundation, we are committed to finding a cure for epithelioid hemangioendothelioma (EHE), an ultra-rare and potentially aggressive cancer that affects one in a million people. Every contribution helps us advance groundbreaking research, support patients, and foster collaboration among clinicians and researchers worldwide. There are two impactful ways you can support our mission: […]

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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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