The EHE Global Patient Registry empowers people with Epithelioid Hemangioendothelioma (EHE) to join together to improve our understanding of this ultra-rare sarcoma.
Together, we will advance research to ultimately find effective treatments and a cure for EHE. This registry aims to create a large, global, long-term database and resource about EHE. EHE is incredibly rare, so it is important that as many people as possible join the registry. People who have been diagnosed with EHE (or their legal adult representative) from anywhere in the world are encouraged to join and describe their experience with EHE over time. The registry is hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform.
For questions, please email [email protected].
Below are some of the frequently asked questions to help you learn more about the EHE Global Patient Registry. If you have further questions, contact us at [email protected].
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