Newly Diagnosed

Whether you are newly diagnosed or have been living with Epithelioid Hemangioendothelioma (EHE) for a while, you are not alone. We know there are many emotions, symptoms, and questions associated with an EHE diagnosis, and we hope this page will give you a good starting point as you navigate your diagnosis.

First Steps

We understand that new patients and caregivers often feel overwhelmed with information with a new EHE diagnosis, so we recommend to first focus on these three steps:

number 1

Please visit our Provider Directory for a list of providers with experience treating EHE. EHE is an ultra-rare sarcoma that many oncologists are unfamiliar with, and have little or no experience treating. It is important that you seek experts in the management of rare sarcomas who are familiar with this disease. 

First, seek a specialist for your diagnosis and treatment plan. This specialist should work with a multidisciplinary team to coordinate different treatments. You can ask if the specialists will coordinate with your local oncologists on your treatment plan.

There are providers with EHE experience across the US, and some may be willing to provide a second opinion or partner with your oncologist on your treatment plan.

number 2

Gaining a good understanding of your diagnosis and treatment options will allow you to be your best advocate because most doctors have never treated EHE. Learn the basics of EHE from credible resources and know that every patient is different. Start with these resources:

number 3

Join our mailing list to stay informed about patient programming, research advances, and opportunities to get involved.

We are here to answer questions and to provide you with updated resources for this unpredictable and ultra-rare sarcoma.

We can be reached through email at [email protected] or by phone at 1-877-460-4240.

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