patient registry

EHE Global Patient Registry

If possible please support the collection of EHE patient data by joining and supporting the EHE Global Patient Registry.
Details about the registry, Q&A, the consent process, and how to register can be found at the link below.

It is again very hard for us to over-emphasise the importance of collecting patient data through a confidential, appropriately structured, ethically approved, anonymised data registry. The EHE Global Patient Registry that meets these criteria, created and managed by The EHE Foundation in the US, empowers patients with Epithelioid Haemangioendothelioma (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. Patients 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 more detail about the registry, and a comprehensive Q&A section please go to:
https://fightehe.org/registry/