One-in-a-million people are living with EHE worldwide.

Our mission is to find treatments and a cure for epithelioid hemangioendothelioma (EHE) by advancing research and driving collaboration among patients, researchers, and clinicians.

We envision a world where Epithelioid Hemangioendothelioma (EHE) is easily diagnosed and treatable. Join our dedicated community by subscribing to our emails.

Patient-Powered EHE Research

EHE Biobank

Patients are the key to finding new treatments for EHE! Researchers need tumor tissue and fluid from EHE patients to understand disease progression and speed the development of new drugs and therapies.

Patient-Powered EHE Research

EHE Global Patient Registry

The EHE Global Patient Registry empowers people with Epithelioid Hemangioendothelioma (EHE) to join together to improve our understanding of this ultra-rare sarcoma. We need every EHE patient to join this critical tool used to support researchers searching for treatments and a cure for EHE.

Latest EHE News, Events and Research

Welcome New Board Member John McFadden, Ph.D., CRNA, APRN

By EHE Foundation | November 17, 2023

The EHE Foundation was founded by patients, for patients. Continuing that tradition, we aredelighted to announce that EHE patient John McFadden, Ph.D., CRNA, APRN, has joined ourBoard of Directors. With more than 35 years of experience in health care, Dr. McFadden has held positions as anurse executive, hospital and university program accreditation surveyor, faculty member, […]

Giving Tuesday is November 28th

By EHE Foundation | November 14, 2023

During the busy holiday season, The EHE Foundation asks that you join us in celebrating Giving Tuesday, not just on Tuesday, November 28th, but throughout the month of November. All proceeds will support our vision: a world where EHE is easily diagnosed and treatable. Retailers are bombarding us with Black Friday and Cyber Monday advertisements. Let […]

Spotlight on Young Investigator Nicholas Scalora, Advancing the Science Behind EHE

By EHE Foundation | November 14, 2023

The EHE Foundation is proud to have awarded the 2023 Fellowship Travel Grant to Nicholas (Nick) Scalora, a 5th year graduate research assistant in the Tanas Laboratory, at the University of Iowa, where the team studies the role of the Hippo pathway in sarcomas. Dr. Munir Tanas, expert pathologist and researcher, was first author of […]

Highlights from CTOS 2023

By EHE Foundation | November 8, 2023

Last week EHE Foundation Director of Research Denise Robinson, attended the Connective Tissue Oncology Society (CTOS) 2023 annual meeting in Dublin, Ireland. Every year, physicians, scientists, and advocates from around the world come together to advance patient care and increase knowledge in connective tissue tumors. EHE is one of over 100 subtypes of sarcoma, which […]

EHE Global Research Convened in Milan, Italy

By EHE Foundation | October 2, 2023

In September 2023, EHE Director of Research Denise Robinson met over three days in Milan, Italy, with patient advocates and researchers to discuss EHE research funded by this community. Exciting progress is happening in this multi-national collaborative research under the leadership of Dr. Silvia Stacchiotti and Dr. Nadia Zaffaroni (Istituto Nazionale Tumori IRCCS, Milan), and […]

Funded Research Project Update: Use of pre-clinical EHE models to identify druggable pathways to treat EHE

By EHE Foundation | September 7, 2023

Investigator: John Lamar, PhD, Albany Medical College Dr. Lamar was awarded a 3-year grant by The EHE Foundation in 2022, that aims to identify FDA-approved drugs that inhibit EHE cell growth, and then test them in pre-clinical mouse models for the treatment of EHE. What does this mean for patients? This could mean a shorter […]

Kylar K

By Maggie Cameron | July 17, 2026

Taz and Terry Kelly’s Story of Loving Kylar Through Their EHE Journey Taz and Terry‘s only child, Kylar, was diagnosed with EHE in the fall of 2024 at just 21 years old. What followed was seven months of hospital stays, hard-won recoveries, and devastating setbacks. This is their story of loving and losing Kylar, and […]

ADCs–Unlocking Future Treatment Advances for EHE

By Kristianne Oristian, PhD | June 25, 2026

Why this matters for people with EHE For people living with EHE, finding an effective treatment and understanding who best benefits from treatments is one of the greatest challenges of this disease. Traditional chemotherapy is often ineffective for EHE, and the search for more effective treatment options is central to our mission at the EHE […]

A Powerful Community Gathering at the 2026 EHE 360 Global Conference

By EHE Foundation | June 23, 2026

The EHE Foundation hosted the sixth annual virtual convening of the EHE 360 Global Conference on April 31 – May 1, 2026. The conference brought together patients, caregivers, clinicians, researchers, regulators, and industry partners from around the world to promote education, broaden research collaborations, and advance therapeutic development for epithelioid hemangioendothelioma (EHE), an ultra-rare sarcoma. […]