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:

FIND A SARCOMA EXPERT

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.

LEARN ABOUT EHE

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:

Read the patient-focused publication on EHE management titled Consensus Paper: Guidance for Managing EHE, which will allow you to engage in more informed discussions and decision-making with your medical team.
Print and understand Prepare for Your Appointment After Your EHE Diagnosis, a comprehensive checklist of things to do and specific questions to ask your doctor.
Watch the videos from the most recent EHE 360 Patient Conference. A great one to start with is EHE 101: What You Need to Know by Brian Rubin, MD, PhD.

CONNECT WITH US

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.

Learn More

Unlock the Cure through Patient-Led Research

Research is the highest priority toward our mission to find effective treatments and ultimately a cure for EHE. The EHE Foundation funds studies and projects for promising research. Because EHE is incredibly rare, patients can play a significant role in moving research forward.

EHE Global Patient Registry

The registry gathers information on patients’ experiences with EHE. Data from the registry will be analyzed to answer important questions about EHE, allow a better understanding of EHE, and potentially identify new research opportunities related to EHE.

EHE Biobank

Researchers need tumor tissue and blood from EHE patients in order to conduct research on EHE and identify systemic treatment options. You can donate tumor tissue or body fluids from upcoming procedures by working with our Biobank team.

Clinical Trials

A clinical trial is a type of research that studies a test, treatment, or other intervention according to a research plan. This may include drugs that are not yet approved by the FDA; drugs that are already approved and are being investigated for new or different purposes; comparisons of drugs, devices or procedures; and other types of interventions.

A list of clinical trials accepting EHE patients is available on our website. We encourage you to discuss them with your doctor.

Connect on Social Media

When you are ready, connect with The EHE Foundation on social media @ehefoundation on Facebook, LinkedIn, Instagram, and X. Connect with others living with EHE, or follow our news and events. Encourage your doctor, family, and friends to join our mailing list and follow us, too.

Grow Your EHE Knowledge

EHE research has advanced profoundly over the last decade and it is important that you understand the basics of research, so you can advocate for your own care and possibly impact future research. We have many tools to guide you and your provider along the way.

EHE Video Presentations - We have several video presentations available from EHE 360, an annual international, global meeting hosted by The EHE Foundation featuring various EHE topics by worldwide EHE experts.

EHE Library - A critical part of improving rare cancer care is the use of scientific publications and articles, which is how scientists and clinicians either share results of a study they conducted or how they share their review from others’ published research. Most articles are written for other scientists and clinicians, but it is becoming more common for patients to review these articles to share specific findings with their doctor. Our EHE Library links to nearly 200 articles specifically related to EHE.

Build An Experienced Medical Care Team

With rare cancers, patient care should be a team effort. This team philosophy is called collaborative care and works best when a team of providers work together to evaluate a patient’s diagnosis and treatment. An EHE patient’s care team may include providers in primary care, surgical oncology, radiology, pathology, symptom or pain management, surgery, chemotherapy, radiation therapy, nutrition, social work, psychiatry, and/or other areas. Begin building your team with a provider experienced with EHE.

A professional patient navigator can assist with patient care and provide financial, legal, and social support. These trained professionals help EHE patients deal with insurance companies, second opinions, and many other unique needs that come with a rare cancer diagnosis.

Join a Support System

Our Additional Resources page offers information about available support services for EHE patients. We encourage every patient to use a personally preferred support system to help cope with the emotional and practical challenges of EHE. There are many individual, peer-to-peer, small group, or large group support systems that are held in communities, online, or by phone. Finding an emotional outlet at a time that is right for you will be key and may be part of your collaborative care.

We also encourage patients to interact with The EHE Foundation on social media, where you will encounter other EHE patients.

Organize Your Medical Records

Many patients with a complex or rare diagnosis, like EHE, find it helpful to maintain a personal copy of their medical records. Some patients use a 3-ring binder and request a printed record at each appointment. Other patients prefer to take advantage of electronic medical records (EMRs) and keep a digital copy of their medical records (including scans) on hand at all times. There are also online services available. Whichever method you choose, please understand a patient’s health record is confidential and should be protected at all times.