Research Projects & Initiatives

The EHE Global Patient Registry is an online registry for people with epithelioid hemangioendothelioma (EHE). This registry includes a series of surveys, which asks questions about a person’s experience with EHE over time. The registry is hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform. Click here to learn more or to join the registry.

The EHE Biobank is an open, ongoing collection of tissue samples and other biospecimens, including blood and bodily fluids donated by people with EHE. The Biobank has been developed by The EHE Foundation with the generous support of private donations and grants to accelerate EHE research. Click here to learn more about participating.

In 2019, The EHE Foundation initiated a global multi-institutional retrospective chart review of EHE patients in order to describe EHE biological behavior, treatment utilization, and outcomes across various EHE locations. This is the first large-scale EHE study which will further inform clinicians and researchers for future treatment decisions and research initiatives.

The EHE Foundation is excited to announce a partnership with the MyPART network of NCI’s Rare Tumors Initiative (RTI) – which focuses on accelerating the translation of potential new therapies for rare tumors by bringing together patients, clinicians, researchers, and patient advocates. Click here for the latest MyPART news.

The EHE Foundation is collaborating with the Rare Cancer Research Institute and The Broad Institute to further the development of an EHE cell line. Cell lines are the main model to study cancer behavior and response to various therapies. Cell line development begins with donated EHE tissue from patients’ surgeries. Find out how you can donate your tissue to the EHE Biobank and contribute to this and other research