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The European Organisation of Research and Treatment of Cancer (EORTC) is conducting research to better understand health-related quality of life (HRQoL) concerns among people living with rare cancers. Recently, researchers analyzed results from a group of 31 people with EHE from 11 different countries who participated in the study. The findings showed that pain–and the […]
Prior research has shown that a class of medications called microtubule inhibitors may be effective at controlling the growth of EHE tumors. Recently, researchers conducted a phase 2 study to test whether the microtubule inhibitor eribulin is a safe and effective way to treat patients whose tumors continued to grow after prior treatment. Six (6) […]
EHE Foundation is pleased to announce the appointment of two distinguished physician-scientists to its Scientific & Medical Advisory Board: Nam Quoc Bui, MD, and Benjamin A. Nacev, MD, PhD. Their expertise in sarcoma medical oncology and translational research will greatly strengthen the Foundation’s advisory capacity as we work to accelerate progress in understanding and treating […]
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 […]
The York EHE Foundation hosted its 1st Annual Golf Outing to benefit the EHE Foundation and Cleveland Clinic on Friday, July 17, 2015. The event was a huge success raising over $17,000 for our cause! Mandy O’Connor Mandy Elizabeth O’Connor was born in Seoul, South Korea, but became the daughter of Paul and Virginia […]
On April 22, 2014, Delaney was diagnosed with an extremely rare form of cancer called Epithelioid Hemangioendothelioma, also known as EHE. This form of cancer has absolutely zero funding or attention from outside sources because so few people are affected by it. Every penny of research has been funded by EHE patients, families, and friends. […]
Georgiana has a very special place in the hearts of the people who knew her. She had an aggressive type of EHE that at the time of diagnosis already spread to many sites of her body. She underwent very tough treatments, harsh chemo, radiation, surgery, but was one of the most positive enthusiastic members of […]