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 Research

Patients Powering Research for Epithelioid Hemangioendothelioma

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.

EHE Biobank

Patients are the key to finding new treatments for EHE! Researchers need tumor tissue, blood and fluid from EHE patients to understand disease progression and speed development of new drugs and therapies.

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. 

Latest EHE News, Events and Research

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

Giving Tuesday 2023 Raises over $160k for EHE Research

By The EHE Foundation | December 15, 2023

Thank you! Together, we raised more than $160,000 to fund critically needed research into epithelioid hemangioendothelioma (EHE). Rare cancers, like EHE, lack sufficient governmental and pharmaceutical funding sources available for more common cancers. Your donations support our work to level the playing field. A special thanks to: Thank you for joining us in our fight […]

Read More
Community Connections: Help is on the way! Non-pharmacologic Management of Cancer Pain

Help is on the way! Non-pharmacologic Management of Cancer Pain

By The EHE Foundation | April 16, 2024

Join Dr. Tamara Vesel, Chief of Palliative Care at Tufts Medical Center in Boston, MA, and her Research Assistant, MD/MPH candidate, Abigail Lebowitz for an interactive session exploring the topic of non-pharmacological management of cancer pain. Dr. Vesel is a globally recognized palliative care specialist with expertise in pain and symptom management, integrative medicine, clinical […]

Read More
EHE Advocates at the ESMO Congress 2024

EHE Advocates at the ESMO Sarcoma and Rare Cancers Congress 2024

By The EHE Foundation | March 29, 2024

In March Denise Robinson, Director of Research for The EHE Foundation attended the ESMO Sarcoma and Rare Cancers Congres 2024 in Lugano, Switzerland. This congress brought together world-renowned experts including researchers and clinicians, to present and discuss the latest advancements in the treatment of sarcomas and rare cancers.  Topics ranged from the role of immune […]

Read More
PUSH Project: Pushing Rare Sarcoma Beyond Hope

PUSH Project: Pushing Rare Sarcoma Beyond Hope

By The EHE Foundation | March 29, 2024

Under the umbrella of the Connective Tissue Oncology Society (CTOS), the Ultra-rare Sarcoma Working Group, a broad group representing the global sarcoma community, including clinicians, scientists, patient advocates, and non-profit organizations has come together to establish a consortium, PUSH, to collect and make the best use of all available evidence to facilitate the development of […]

Read More