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.

EHE Biobank

Patients Powering Research for EHE

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

Patients Powering Research for EHE

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.

Consensus Paper on EHE Management

The Consensus Paper is a powerful, EHE-specific resource for patients, caregivers, and medical professionals that answers critical questions regarding diagnosis and treatment. Patients are encouraged to read it to better understand EHE and facilitate more informed discussions and decision-making with medical teams.

Patient Services

Whether you are newly diagnosed or have been living with EHE for a while, you are not alone. The EHE Community is stronger together and includes patients, their families and friends, and the many specialists working tirelessly to find treatments and a cure.

Visit Patient Services for resources, education, and support for patients and their caregivers.

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 […]

Read More
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 […]

Read More
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 […]

Read More
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.

Read More
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 […]

Read More
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 […]

Read More
The EHE Foundation Attends ASCO 2024

Advancing our Mission, Representing EHE Patients at ASCO 2024

By The EHE Foundation | June 19, 2024

Our Interim Executive Director and Director of Research, Denise Robinson, recently represented epithelioid hemangioendothelioma (EHE) patients at the 2024 ASCO Annual Meeting in Chicago, Illinois, where nearly 40,000 global oncology professionals convened. The American Society of Clinical Oncology (ASCO), is the world’s leading organization for oncology, bringing together advocates, healthcare providers, and related professionals to […]

Read More
2024 EHE Fun Run & Walk Recap

Reflecting on Success: 2024 EHE Fun Run & Walk Recap

By The EHE Foundation | June 18, 2024

With enthusiasm and gratitude, The EHE Foundation is proud to celebrate another successful year of the Annual EHE Fun Run & Walk. This event, dedicated to supporting The EHE Foundation’s mission to find treatments and a cure for epithelioid hemangioendothelioma (EHE), always brings our community together in an extraordinary way! With 1387 registrations, our hearts […]

Read More
EHE community donations expand grant.

Planting Seeds for Future Developments: EHEF Research Grant Grows

By The EHE Foundation | June 14, 2024

The EHE Foundation invests in novel EHE research yearly through its EHE Research Grants Program. The program officially began in 2021, with only a few applicants interested in EHE research. Today, 10 applicants have submitted proposals in our 2024 grants cycle.  Along the way, we have had the good fortune to meet and collaborate with […]

Read More