People with EHE are

one-in-a-million!

Donations to support EHE cancer research are DOUBLED through Giving Tuesday, December 2, 2025. Give now to DOUBLE your impact!

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.

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

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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EHE Community Connections

Science Saturday: Patient-Powered Research

By The EHE Foundation | January 31, 2024

Join The EHE Foundation’s Director of Research, Denise Robinson, as she explains the power of patients to advance research into EHE. What is patient-powered research, why does it matter, and how can you contribute? Join us to learn what’s happening in EHE research and the pivotal role you play in advancing our understanding of this […]

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IK-930 Orphan Drug Designation

IK-930 Receives Orphan Drug Designation for EHE

By The EHE Foundation | January 10, 2024

Ikena Oncology has shared that on December 14th, 2023, the Food and Drug Administration (FDA) granted Orphan Drug Designation to IK-930 for the treatment of epithelioid hemangioendothelioma (EHE). We are excited about this designation following initial positive data from the IK-930 Phase I clinical trial published in Ikena’s November 9th press release. What does this […]

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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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Drs. Claudia Giani and Anna Maria Frezza

EHE Stabilization with Sirolimus: Results From POEM, a Prospective Multicentric Observational Study

By The EHE Foundation | November 6, 2025

Drs. Claudia Giani, Anna Maria Frezza, Silvia Stacchiotti, and colleagues from the Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy, and Royal Marsden Hospital, London, UK, presented results from POEM: a prospective observational study on Epithelioid Haemangioendothelioma at ESMO Congress 2025. The data presented included 57 consecutive molecularly confirmed EHE patients who entered the study, […]

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Jason Hanna, PhD from the Hanna Lab at Purdue University

Hanna Lab at Purdue University: ‘When cells in the body stop following the rules, cancer can take hold.’

By The EHE Foundation | October 14, 2025

You met Jason Hanna, PhD, at the 2025 EHE Global Patient Conference, where he highlighted work his lab is undertaking in EHE. We are thrilled to share a recent publication in Molecular Oncology from the Hanna Lab at Purdue University, highlighting their findings from a study focused on the YAP1-TFE3 subtype of EHE.  The YAP1-TFE3 […]

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