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 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.

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

The EHE Foundation Welcomes Two New Board Members

The EHE Foundation Welcomes Two New Board Members

By The EHE Foundation | June 5, 2025

The EHE Foundation is proud to announce the addition of two new members to our Board of Directors: Hollace D. Leppert, DO, FACOI, and Krista Sheeley, BSN, RN. Both bring extensive healthcare experience, leadership, and passion to our mission. We are excited to welcome them to the EHE Foundation and look forward to their insight, […]

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2025 EHE 360 Global Patient Conference

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

By The 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 The 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 The 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 The 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 The 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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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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