Find Expert Care
Because EHE is an ultra-rare cancer, it is highly recommended that people diagnosed with EHE seek care from sarcoma specialists with experience treating and managing EHE.
These specialists are often based at large academic medical centers or sarcoma reference centers, where multidisciplinary sarcoma teams are equipped to evaluate complex rare cancers. A sarcoma specialist can confirm your EHE diagnosis and determine the most appropriate treatment options and long-term management plan.
What is a Multidisciplinary Sarcoma Team?
A multidisciplinary sarcoma team is a specialized group of experts that may include medical oncologists, surgical oncologists, orthopedic oncologists, radiation oncologists, interventional radiologists, and pathologists—who work together to diagnose and treat sarcomas. Sarcoma experts treat and manage more than 100 sarcoma subtypes, including EHE, one of the rarest.
Why Sarcoma Expertise Matters
EHE can arise anywhere in the body and has a highly variable clinical course, and it may be difficult to detect changes in the disease outside of expert sarcoma care.
Finding a sarcoma specialist experienced with EHE gives patients and families the best treatment options and the best chance of positive outcomes.
Questions to Ask
When considering a sarcoma specialist or cancer center, you may want to ask:
- Do you have experience treating EHE?
- Will you review my pathology with an expert pathologist to confirm my EHE diagnosis?
- Is there a multidisciplinary sarcoma team to review my diagnosis and discuss treatment options?
- Do you participate in clinical trials for EHE?
Additional Resources Outside the United States
In Australia, consult the Australia and New Zealand Sarcoma Association to find providers and centers specializing in sarcoma.
In Europe, Central and South America, and Northern Asia, visit the Sarcoma Patient Advocacy Global Network (SPAGN) to find sarcoma centers.
Provider Directory
This directory is for informational purposes only and is not intended as a recommendation, referral, endorsement, or medical advice. The providers and institutions included are identified through their work with the EHE Foundation, participation in EHE-related research, or experience caring for people with EHE. This list is not comprehensive and may change over time.
If you need help navigating this resource or finding a sarcoma specialist, please contact us at [email protected]
Working With Your Care Team
In an ultra-rare cancer, like EHE, you are part of the shared decision-making process. Learn how to approach your care with knowledge and empowerment.