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With the generosity, heart, and determination of the EHE community and the EHE Foundation Board of Directors, we raised more than $155,000 — and counting — for EHE Research this Giving Tuesday! In a world with so many urgent needs, we are profoundly grateful for how this community continues to show up for one another to advance our mission of finding treatments and a cure for EHE. Thank you!
EMPOWER YOURSELF WITH KNOWLEDGE
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 […]
Read MoreA recent study published in the European Journal of Cancer represents the largest collection of data from people with EHE in Canada. Researchers found that EHE can behave very differently from person to person—about one-third of patients were diagnosed by chance and did not need immediate treatment, while others had more aggressive disease. About half […]
Read MoreIn a recent issue of AME Case Reports, a team led by Dr. Clifford Atuiri describes a case of pulmonary epithelioid hemangioendothelioma (EHE) and places it within the broader understanding of the disease. The authors note that EHE in the lungs can be difficult to diagnose because symptoms and imaging often resemble more common lung […]
Read MoreA recent study published in Cancer Control describes a treatment approach for hepatic (liver) EHE called subsegmental bland embolization, which blocks blood flow to individual tumors. In three patients with multiple liver tumors, most treated tumors shrank significantly, and the disease was initially controlled in all patients. The procedure was well tolerated, with no serious […]
Read MoreThe EHE Foundation is proud to announce the appointment of Kristianne (“Kristi”) Oristian, PhD, as our new Director of Research & Engagement. In this role, Kristi will work closely with Executive Director Denise Robinson, who previously led both organizational and research strategy, to advance the Foundation’s mission and strengthen our growing impact in the global […]
Read MoreThe EHE Foundation had the privilege of attending the CTOS 2025 Annual Meeting, held November 12-15, in Boca Raton, Florida. The Connective Tissue Oncology Society (CTOS) is a global, professional medical organization of clinician-scientists, translational researchers, and patient advocates united by a single goal: advancing treatment of sarcomas. For the EHE community, this annual gathering […]
Read MoreUnder the umbrella of the Connective Tissue Oncology Society (CTOS) Ultra-rare Sarcoma Working Group, a broad group representing the global sarcoma community, including clinicians, scientists, patient advocates, and non-profit organizations, has come together to form PUSH (Pushing Ultra-Rare Sarcomas Beyond Hope). This consortium has been established to collect and make the best use of all […]
Read More“The patient perspective on sirolimus for epithelioid hemangioendothelioma (EHE): results of a community survey highlighting the importance of equitable access to treatments” was published on February 25, 2024, in the scientific journal Frontiers in Oncology. In early 2023, EHE patient advocates surveyed the global EHE community to gain patients’ perspectives on sirolimus to generate information […]
Read MoreOn Saturday, February 24, 2024, Denise Robinson, Director of Research provided an update to the global EHE community focused on ‘Patient-Powered EHE Research’. Denise highlighted research projects The EHE Foundation is funding and supporting through resources, and projects initiated by the foundation including the EHE Global Patient Registry and EHE Biobank. Denise highlights progress made […]
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