RAO Network

The EHE Foundation

The EHE Foundation's Executive Director Medha Deoras-Sutliff (right) poses with Board President Jenni Kovach (left) outside
The EHE Foundation's Executive Director Medha Deoras-Sutliff (shown on right) supports Board President Jenni Kovach, who was diagnosed with epithelioid hemangioendothelioma (EHE) in 2018. Photo courtesy of The EHE Foundation.
The EHE Foundation's Executive Director Medha Deoras-Sutliff (shown on right) supports Board President Jenni Kovach, who was diagnosed with epithelioid hemangioendothelioma (EHE) in 2018. Photo courtesy of The EHE Foundation.

Collaboration is the path to discovering effective treatments

In 2017, Jenni Kovach was diagnosed with EHE, a very rare kind of cancer. She underwent a liver transplant in 2018 and is currently the President of The EHE Foundation.

Today, Jenni and a team of compassionate and highly motivated individuals aim to ​build on prior research efforts and jumpstart an effective patient-focused, collaborative research network program geared toward discovering effective treatments for EHE patients worldwide. “Curing cancer is a huge goal but we feel like it is attainable by creating a strong foundation to bring great minds together and fund critical research,” says Jenni.

EHE is a vascular sarcoma and can affect people of all ages but mostly young adults. Many patients remain without a diagnosis or are misdiagnosed, which is why it is so important to consult with a comprehensive cancer center with sarcoma and pathology experts. EHE occurs in a variety of anatomic sites, including the soft tissues, bones, and visceral organs. Currently, there is 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.

Research Progress & Capacity Building Updates

The EHE Foundation has made significant forward progress by:

  • Awarding $250,000 in research grants globally
  • Initiating an EHE Biobank, and a global EHE Patient registry
  • Expanding provider information to improve diagnosis and access to care
  • Creating an online comprehensive publications reference library
  • Implementing a research discussion forum for the global EHE research network
  • Organizing the ground-breaking EHE 360 International Conference series bringing together global EHE experts to accelerate treatment development and disease understanding
  • Curing cancer is a huge goal but we feel like it is attainable by creating a strong foundation to bring great minds together and fund critical research.

    Learn How We Support Science

    Science Funding

    Learn more about funding apportunities.

    Hear Rare Disease Stories

    Hear Rare Disease Stories

    Listen to The Story Collider podcast featuring stories about patients who are driving progress against rare disease.