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

Patty Cogswell

The Importance of Biobanking

By EHE Foundation | May 17, 2021

Biobanking is a brand-new endeavor for us at The EHE Foundation. Researchers retain frozen and stored tissue and biological samples from surgeries, which usually remains within the institution where the procedure takes place. Today, biobanking is a game-changer for rare disease and patient-led organizations like ours. Biobanks accelerate research by safe-guarding high-quality, donated tissue samples […]

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DNA

Researchers Engineer Much-Needed Mouse Model of a Rare Vascular Sarcoma

By EHE Foundation | April 20, 2021

Dr. Rubin used a novel approach to target the gene fusion that causes epithelioid hemgioendothelioma, engineering a novel, first-of-its-kind mouse model of the disease, which will help advance studies to identify new treatments. Click here to read the full article. Sharing exciting news highlighting Dr. Brian Rubin’s research at the Lerner Research Institute at Cleveland […]

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Leah Heinrich

Leah Heinrich Participates on Scientific Peer Review Panel

By EHE Foundation | March 2, 2021

For Immediate Press Release:  SCIENTIFIC PEER REVIEW OF CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS’ RARE CANCERS RESEARCH PROGRAM FOR THE DEPARTMENT OF DEFENSE The Congressionally Directed Medical Research Programs’ (CDMRP), Rare Cancers Research Program (RCRP) consumer advocate Leah Heinrich recently participated in the evaluation of research applications submitted to the RCRP. Leahwas nominated for participation in […]

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The Pledge Q4 2020

The Pledge: Edition 23, Q4 – Oct-Dec, 2020

By EHE Foundation | February 17, 2021

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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The Pledge Q3

Stay up to Date on EHE by Reading The Pledge: Edition 22, Q3 – Jul-Sep, 2020

By EHE Foundation | November 10, 2020

Click here to read the Pledge: Edition 20, Q3 – Jul-Sep, 2020

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EHE Circle of Friends

EHE Circle of Friends Monthly Giving Program Kicks Off!

By EHE Foundation | October 27, 2020

We invite you to join our Circle of Friends! With so much uncertainty around us, your consistent support means more than ever. Why a monthly giving campaign? It’s Sustained Support: Monthly gifts allow us to predict our donations and plan ahead by expanding research and strengthen The EHE Foundation It’s a Community: Becoming an EHE […]

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Kristianne Oristian, PhD

The EHE Foundation Welcomes Kristianne Oristian, PhD, as Director of Research & Engagement

By EHE Foundation | December 9, 2025

The EHE Foundation is proud to announce the appointment of Kristianne (“Kristi”) Oristian, PhD, as our new Director of Research & Engagement. In this role, Kristi will work closely with Executive Director Denise Robinson, who previously led both organizational and research strategy, to advance the Foundation’s mission and strengthen our growing impact in the global […]

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EHE Foundation at CTOS 2025

Advancing EHE Research on the Global Stage: Highlights from CTOS 2025

By EHE Foundation | December 5, 2025

The EHE Foundation had the privilege of attending the CTOS 2025 Annual Meeting, held November 12-15, in Boca Raton, Florida. The Connective Tissue Oncology Society (CTOS) is a global, professional medical organization of clinician-scientists, translational researchers, and patient advocates united by a single goal: advancing treatment of sarcomas.   For the EHE community, this annual gathering […]

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The Pledge: Edition 42 - Q3 - July-September 2025

The Pledge: Edition 42, Q3 – July-September, 2025

By Maggie Cameron | November 11, 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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