One-in-a-million people are living with EHE worldwide.

Our mission is to find treatments and a cure for epithelioid hemangioendothelioma (EHE) by advancing research and driving collaboration among 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.

With the generosity, heart, and determination of the EHE community and the EHE Foundation Board of Directors, we raised more than $155,000 — and counting — for EHE Research this Giving Tuesday! In a world with so many urgent needs, we are profoundly grateful for how this community continues to show up for one another to advance our mission of finding treatments and a cure for EHE. Thank you!

Patient-Powered EHE Research

EHE Biobank

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.

Patient-Powered EHE Research

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. We need every EHE patient to join this critical tool used to support researchers searching for treatments and a cure for EHE.

Latest EHE News, Events and Research

2025 EHE 360 Global Patient Conference

Celebrating Progress and Hope: 2025 EHE 360 Global Patient Conference Recap

By EHE Foundation | June 3, 2025

The EHE Foundation is proud to celebrate the success of the 2025 EHE 360 Global Patient Conference, a truly transformative event that brought together the global EHE community for learning, collaboration, and connection. Over 200 participants from a record 25 countries were united by a common mission to drive progress in EHE research, treatment, and […]

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May is National Cancer Research Month

Fueling Hope Through Research: Celebrating National Cancer Research Month

By EHE Foundation | May 28, 2025

May is National Cancer Research Month, a time to honor the scientists, clinicians, and collaborators who are moving us closer to effective treatments and a cure for epithelioid hemangioendothelioma (EHE). Research is the EHE Foundation’s highest priority in our mission to find effective treatments and ultimately a cure for EHE. With no standard treatment available, […]

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SPAGN discussion panel on clinical trials in rare sarcomas

Strengthening Global Collaboration in Sarcoma: Highlights from the 2025 SPAGN Annual Conference

By EHE Foundation | May 6, 2025

From April 11–13, 2025, representatives of The EHE Foundation participated in the 15th Annual Conference of the Sarcoma Patient Advocacy Global Network (SPAGN), marking SPAGN’s first conference in the United States. The National Cancer Institute (NCI) co-hosted the event, underscoring the importance of international collaboration in sarcoma advocacy. Denise Robinson commented, “As a long-time supporter […]

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EHE Meetup in Washington, D.C.

EHE Foundation Hosts EHE Patient Meetup in Washington, D.C.

By EHE Foundation | May 1, 2025

Five people living with EHE, representing three countries, gathered on Sunday, April 13, 2025, for lunch and camaraderie, marking the first-ever meetup of its kind in the United States. The EHE Foundation was in Washington, D.C. that same weekend to participate in the Sarcoma Patient Advocacy Global Network (SPAGN) Annual Conference, and put out the […]

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Rare Disease Day 2025: Shining a Light on EHE and the Power of Awareness

By EHE Foundation | March 4, 2025

Every year, on the last day of February, the world comes together to recognize Rare Disease Day—a global movement to raise awareness, promote research, and celebrate the strength of those living with rare conditions. This year, February 28, 2025, marked another powerful opportunity to elevate voices from across the rare disease community. At The EHE […]

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The Pledge: Edition 39, Q4 – October-December, 2024

The Pledge: Edition 39, Q4 – October-December, 2024

By EHE Foundation | February 25, 2025

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 the online EHE newsletter, The Pledge.

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Translating molecular mechanisms of EHE to improve patient outcomes

Translating molecular mechanisms of EHE to improve patient outcomes

By EHE Foundation | December 17, 2025

Scientists know that most EHE tumors are caused by specific genetic changes called gene fusions. In most people with EHE, two genes, WWTR1 and CAMTA1, are abnormally fused. In a smaller number of cases, a different fusion involving YAP1 and TFE3 is present. In a recent review published in Critical Reviews in Oncology/Hematology, the authors […]

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EHE in Canada: what a national study tells us

EHE in Canada: what a national study tells us

By EHE Foundation | December 17, 2025

A recent study published in the European Journal of Cancer represents the largest collection of data from people with EHE in Canada. Researchers found that EHE can behave very differently from person to person—about one-third of patients were diagnosed by chance and did not need immediate treatment, while others had more aggressive disease. About half […]

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Pulmonary EHE: a case report and review of literature

Pulmonary EHE: a case report and review of literature

By EHE Foundation | December 17, 2025

In a recent issue of AME Case Reports, a team led by Dr. Clifford Atuiri describes a case of pulmonary epithelioid hemangioendothelioma (EHE) and places it within the broader understanding of the disease. The authors note that EHE in the lungs can be difficult to diagnose because symptoms and imaging often resemble more common lung […]

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