Patient Services - Start Here

Our patient services team is here to help you whether you are newly diagnosed or have been living with EHE for a while. The EHE Community is stronger together and includes patients, families and friends, researchers, doctors, and supporters.

For newly diagnosed patients, we recommend you use the menu on the right side of this page (in order top to bottom) to guide you through the most important topics to familiarize yourself with your diagnosis. For others, this menu is also an easy guide to jump directly where you want to go.

  • What is EHE?
    Learn what we know about Epithelioid Hemangioendothelioma (EHE), genetic causes, prognosis and treatment.
  • EHE Management
    Read the EHE Consensus Paper to learn more from global experts about treatments and management of EHE.
  • Newly Diagnosed
    This page will help those new to EHE navigate website resources and options for support.
  • Provider Directory
    Finding a local provider who is familiar with a disease this rare can be challenging. We've compiled a list of clinicians around the country who have experience with EHE.
  • Patient Registry
    This online registry is a global patient-powered natural history study of Epithelioid Hemangioendothelioma (EHE).
  • Tissue Donation
    Using tissue samples from EHE patients is critical to advancing research toward treatments and a cure for EHE. Learn how to contribute tissue with the help of our Biobank Team.
  • Additional Resources
    Here you'll find links to additional information and support resources for both patients and caregivers.
  • Join Our Community
    Signup for our email newsletter, connect with us on social media and more!

If you don’t find the information you are looking for or need specific guidance as you navigate diagnosis or treatment, contact our patient services team.