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.

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.

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

Ultra-Rare Pushes Forward at the EMA

By 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 […]

Research Roundtable: Advocacy in Action

By EHE Foundation | February 11, 2025

In late January, 2025, EHE advocacy leaders from The EHE Foundation, EHE Rare Cancer Charity UK, and EHE ITALIA Associazione Non Solo LAURA ODV coordinated a joint meeting with expert clinicians and researchers in Amsterdam, The Netherlands. Stakeholders from Italy, the United Kingdom, and the United States reviewed progress on ongoing collaborative research programs and explored key research […]

Results of a Phase 2 Trial of Trametinib in Advanced EHE

By Maggie Cameron | January 24, 2025

Dr. Schuetze will provide an overview of the rationale for treatment of EHE with trametinib, an oral inhibitor of the MEK kinase; the trial design of 10015/SARC033; and the results of the primary and secondary study endpoints. The presentation will also include an update on exploratory investigation of blood-based biomarkers including hemoglobin, C-reactive protein, and […]

Sirolimus for the Treatment of EHE

By EHE Foundation | January 7, 2025

Dr. Silvia Stacchiotti, Medical Oncologist at the Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy, joined us on January 22, 2025, for an informative presentation and discussion about sirolimus for the treatment of EHE. She highlighted data currently available on the use of sirolimus as compared to other systemic therapies used to treat EHE and […]

Highlights from CTOS 2024

By EHE Foundation | December 30, 2024

In November, Denise Robinson, Executive Director and Director of Research attended the CTOS 2024 Annual Meeting in San Diego, CA. The Connective Tissue Oncology Society (CTOS), is a professional medical organization that brings together multi-disciplinary clinician-scientists, translational researchers, and advocates from all over the world to advance the treatment of sarcomas. Many of the world’s […]

The Pledge: Edition 38, Q3 – July-September, 2024

By EHE Foundation | November 21, 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.

Advocacy in Action: ESMO Sarcoma and Rare Cancers Congress & EHE Research Meeting

By Maggie Cameron | April 8, 2026

In March, EHE Foundation was represented at two important meetings in Europe focused on sarcoma, rare cancers, and EHE research. These gatherings were invaluable opportunities to connect with clinicians, researchers, and fellow advocates working to improve care, deepen understanding, and advance progress for people affected by EHE. Executive Director Denise Robinson attended on behalf of […]

Across Borders and Histologies: Rethinking Endpoints for Vascular Sarcoma Trials

By Kristianne Oristian, PhD | April 8, 2026

Following the publication of results from a phase 2 study of eribulin in two vascular sarcomas, angiosarcoma and EHE, Dr. Tom Chen of National Taiwan University College of Medicine shared commentary in Clinical Cancer Research. He praised the investigators for their collaborative study while also pointing to important considerations for future research. Although angiosarcoma and […]

EHE Foundation Awards $335,000 in New Research Grants to Advance Progress in EHE

By EHE Foundation | March 16, 2026

The EHE Foundation is proud to announce $335,000 in funding through the 2026 EHE Foundation Research Grants Program to support two innovative research projects in epithelioid hemangioendothelioma (EHE). Selected for their scientific merit, potential impact, and clinical relevance, these projects address two important priorities in EHE research: biomarker development and new therapeutic approaches. Together, they […]