Collaboration is the path to discovering effective treatments

As a parent of a child with a rare disease, Jane Gutkovich, VP and Director of Research of The EHE Foundation, has firsthand experience in helping to bridge the gap between patients, researchers, and clinicians. In 2013, Jane’s son was diagnosed with epithelioid hemangioendothelioma (EHE), one of the rarest and only recently described sarcomas. Now, she and a team of compassionate and highly motivated individuals are aiming to ​build on their prior research efforts and jumpstart an effective patient-focused, collaborative program geared toward discovering effective treatments for EHE patients worldwide.

EHE affects people of all ages but mostly young adults. Many patients remain without diagnosis or are misdiagnosed until the tissue is examined in a large cancer center with a sarcoma division. EHE occurs in a variety of anatomic sites, including the soft tissues, bones, and visceral organs. There’s no reliable treatment and no known cure. 

The EHE Foundation is excited to be a part of the Rare As One Network as it gives the organization the opportunity to finally make a significant footprint in the rare disease landscape. It hopes to greatly raise awareness of EHE, attract the right researchers to study the disease, and mobilize the patient community toward treatments and a cure.