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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
The EHE Foundation is pleased to announce that Tammy Silverthorne has been selected as Executive Director. With significant consideration given to the leadership skills, experience, and non-profit expertise needed to successfully guide the Foundation in its next phase of growth, the Board of Directors has selected Tammy Silverthorne to serve in this important leadership role. […]
Read MoreThis research study is open to participants worldwide to advance understanding and treatments for epithelioid hemangioendothelioma (EHE), an ultra-rare vascular sarcoma. Hobart, Wisconsin. June 13, 2023 — The EHE Foundation and the National Organization for Rare Disorders (NORD®) have launched a global patient registry study to research epithelioid hemangioendothelioma (EHE), an ultra-rare vascular sarcoma for […]
Read MoreLamar Lab at Albany Medical College Advancing EHE Research The EHE community is fortunate to have Dr. John Lamar, PhD, Associate Professor in the Department of Molecular and Cellular Physiology at Albany Medical College, and his team, working to advance our mission to find effective treatments for EHE. Dr. Lamar’s lab, the ‘Lamar Lab’, has […]
Read MoreWatch David Casimir, PhD, JD as he provides a patient-level presentation addressing the questions: What is the Hippo pathway and TEAD? How do they relate to EHE? How are they being used to develop EHE treatments? How do these treatments move from the laboratory, through clinical trials, to patient care? Session Recording and Slides Click […]
Read MoreHeld on April 15, 2023, during EHE Awareness Month, the annual EHE 360 EMPOWERING PATIENTS 2023 Global Patient Conference featured an international group of clinicians and researchers presenting the latest clinical and research developments in epithelioid hemangioendothelioma (EHE). This virtual conference left EHE patients and families, doctors, researchers, and advocates empowered with a broader understanding of EHE […]
Read MoreIn March Denise Robinson, our Director of Research joined Dr. Scott Okuno, Chief Medical Officer for SARC (Sarcoma Alliance for Research through Collaboration) to talk about EHE research and patient advocacy. Their discussion beautifully lays out the challenges of facilitating research in the ultra-rare disease landscape. Denise and Dr. Okuno also talked about the growth […]
Read MoreScientists 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 […]
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