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 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.

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.

As the leading research advocacy organization dedicated to finding treatments and a cure for epithelioid hemangioendothelioma (EHE), the EHE Foundation is committed to funding innovative and transformative research that will improve outcomes for individuals diagnosed with EHE.

Latest EHE News, Events and Research

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

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

By The 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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PUSH meets with EMA

Ultra-Rare Pushes Forward at the EMA

By The EHE Foundation | February 15, 2025

On January 31, 2025, expert clinicians, researchers, and global advocacy leaders convened in Amsterdam, the Netherlands, to meet with the European Medicines Agency (EMA) and EORTC, exploring strategies to develop new treatments for ultra-rare sarcomas as a model for ultra-rare tumors. The discussion focused on lessons learned from efforts to secure regulatory approval for sirolimus […]

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EHE Researchers at YAP/TAZ and TEADs Conference in Telluride, CO

Advancing EHE Research at the 9th Annual YAP/TAZ and TEADs Workshop in Telluride, Colorado

By The EHE Foundation | July 17, 2025

The 9th Annual YAP/TAZ and TEADs: At the Crossroads of Cancer workshop took place June 9-13, 2025, in the stunning mountain town of Telluride, Colorado. Hosted by the Telluride Science and Innovation Center and organized by Drs. Guy Weinberg and John Lamar, this unique gathering brought together top-tier researchers and clinicians from academia and industry […]

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Sarah McMullan

Supporting the Next Generation of EHE Researchers: Sarah McMullan of the Lamar Lab Attends International YAP/TAZ Workshop

By The EHE Foundation | July 15, 2025

The EHE Foundation is proud to support the next generation of scientists working to unlock the mysteries of epithelioid hemangioendothelioma (EHE). Recognizing the importance of academic and scientific conferences, the Foundation provides annual support to help young investigators overcome financial barriers that might otherwise prevent them from attending these crucial events. A 2025 Fellowship Travel […]

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2025 EHE Fun Run & Walk

2025 EHE Fun Run & Walk Raises More Than $90,000 for EHE Research!

By The EHE Foundation | July 11, 2025

This Spring, the EHE community showed up stronger than ever for the 2025 EHE Fun Run & Walk, raising an astounding $90,000+ to fund research aimed at improving outcomes in epithelioid hemangioendothelioma (EHE). This marks a record-breaking year for our signature awareness and fundraising event! Each year, the Fun Run & Walk brings together patients, […]

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