EMPOWER YOURSELF WITH KNOWLEDGE
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 […]
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 […]
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. […]
What an amazing ASCO 2026 for so many people affected by cancer. The ASCO Annual Meeting in Chicago brought tens of thousands of global oncology professionals together with the same goal – to change lives. EHE Foundation Executive Director Denise Robinson was there to represent the EHE community, raise awareness of patients’ needs, and connect […]
For a cancer as rare as EHE, connection is something we intentionally create. On Saturday, April 11, 2026, EHE Foundation and Dana-Farber Cancer Institute hosted an inaugural EHE Education Day, bringing together patients, loved ones, clinicians, researchers, and advocates for a day of learning, discussion, and in-person connection. With more than 25 people in attendance, […]
In March, EHE Foundation was represented at two important meetings in Europe focused on sarcoma, rare cancers, and EHE research. These gatherings were invaluable opportunities to connect with clinicians, researchers, and fellow advocates working to improve care, deepen understanding, and advance progress for people affected by EHE. Executive Director Denise Robinson attended on behalf of […]
Join the EHE Foundation for a special Science Saturday on Rare Disease Day, February 28, 2026, 11:00 am – 12:30 pm ET. This virtual event is designed for anyone affected by EHE who wants an up-to-date view of the EHE research landscape. This free, interactive presentation will highlight Foundation-led research, global scientific advances, and the […]
For the global EHE community, 2025 brought challenges, resilience, and momentum. Grounded in connection and a shared commitment to progress in EHE, we look back with emotion, appreciation, and gratitude, and in 2026, we look forward with determination and hope.
Scientists know that most EHE tumors are caused by specific genetic changes called gene fusions. In most people with EHE, two genes, WWTR1 and CAMTA1, are abnormally fused. In a smaller number of cases, a different fusion involving YAP1 and TFE3 is present. In a recent review published in Critical Reviews in Oncology/Hematology, the authors […]