Research Projects & Initiatives

The EHE Patient Registry is coming soon! This is an important opportunity for people with EHE or their caregiver to directly contribute to research. The EHE Patient Registry will inform the EHE community – including patients, families, doctors and researchers, and is essential to understanding this disease. Because EHE is so rare, your participation can help identify trends in treatment utilization and outcomes and support the development of new treatment research.

Details on how to participate in this project will be coming soon!

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