Newly Diagnosed

Whether you are newly diagnosed or have been living with EHE for awhile, you are not alone. The EHE Community is stronger together and includes patients, their families and friends and the many working tirelessly to find treatments and a cure. Although EHE is very rare, there are medical specialists familiar with the disease who will be able to help you and your oncology team. Because of the rarity of EHE, it is crucial for patients to find a sarcoma specialist with experience in EHE.

The EHE Foundation can help you during this process! Please contact Lisa De Young, Director of Patient Liaison Services at for guidance and resources to help you step-by-step as you navigate diagnosis and treatment.

You can also choose to join the EHE Facebook Page for peer-to-peer support. This is a Closed group with almost 2,000 members and a valuable online forum for patients, family and friends to share their story, support others, update members on latest research projects, basically anything and everything EHE. Please note this page is not maintained by THE EHE Foundation (US). 

Support after EHE Diagnosis