Strategy & Impact

Improving the Lives of People Affected by EHE

The EHE Foundation is the largest source of research funding for epithelioid hemangioendothelioma (EHE) and serves a global community of people affected by this ultra-rare sarcoma, along with the clinicians and scientists who treat and study it. Through education, impactful science, and collaboration, we are changing the future for people diagnosed with EHE.

We are intentional and bold in our quest to improve the lives of people affected by EHE. Every day, we are leading the search for better treatments, and one day, a cure. Each voice and every perspective shapes our work: building knowledge from lived experience, investing in early and translational science, and bringing better options to patients and providers in the clinic. Together, we are driving progress.

Advancing Science. Building Knowledge. Supporting Community.

The EHE Foundation has developed a 2026-2030 Strategic Plan that is aligned with the community to deliver on these priorities that guide our work:

1. Accelerate discovery of effective treatments and ultimately a cure for EHE sarcoma by advancing basic and translational science and improving clinical care.
2. Meet the critical need for accessible, practical, and effective tools and educational resources to support people affected by EHE.
3. Ensure fiscal growth & organizational sustainability to enable the discovery of treatments, educational resources, and support of people affected by EHE.

Research We Fund

People Powering Ultra-rare Research

Knowledge We Share

Funding Early Research

In the landscape of cancer research, $3 million is a modest figure. In an ultra-rare sarcoma, these dollars are transformational.

The EHE Foundation Research Grants Program seeks to fund innovative translational science that has a high chance of clinical implementation to improve lives. Over the past 10 years, these investments have fueled early science that has generated preliminary data and important disease models essential for therapeutic development.

This is how the Research Grants Program is designed to work. Our research grants support early research, making larger outside investments possible.

Making Discovery Possible

Drug development depends on tumor cells, disease models, and data. As an ultra-rare disease, these materials are very difficult, if not nearly impossible, for some scientists to access. The EHE Foundation established the EHE Biobank to address this gap.

People with EHE donate tissue, blood, and fluids to a central biorepository, where the Foundation annotates de-identified specimens and makes them available for ethical research.

Building Real-World Evidence

Patients’ experiences, their symptoms, how EHE affects their lives, how their disease presents and changes over time – these are the most important pieces of information that researchers need. To treat the disease, we need to understand how the disease affects people.

The EHE Global Patient Registry is sponsored and managed by the Foundation to benefit people with EHE and serves as a foundational data source for clinician scientists and researchers. People with EHE worldwide self-report their medical histories, treatments, and lived experience in a secure database. These de-identified data are critical for identifying patterns, generating hypotheses, and informing the community about the disease in a way no other institution or study has ever accomplished.

As of mid-year 2026, over 350 people have joined the registry representing 31 countries. For many of these people and countries represented, the EHE Global Patient Registry is the only way these patients will be described in published data. It is our goal that results from the registry are returned to the community – building knowledge that improves care.

Representing EHE Globally

Progress in EHE science relies on awareness and representation in a very crowded cancer research landscape. The EHE Foundation brings the priorities and voices of patients to leading global clinical and basic science meetings, putting this ultra-rare cancer on every agenda.

The American Society of Clinical Oncology (ASCO), the Connective Tissue Oncology Society (CTOS), and the European Society of Medical Oncology (ESMO) are where the world’s leaders in cancer clinical research and drug development convene.

These meetings fuel the growth of our Collaborative Research Network and act as force multipliers for our mission.

Powered by Community

The 2026 EHE Fun Run and Walk drew 755 registrants across 18 teams in 2026 and raised more than $87,000. Families and friends organized golf tournaments, benefit concerts, and youth group fundraisers, many of them in memory of someone they lost.

Community fundraising like this provides much of the Foundation's research funding, including the seed grant described above.