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The EHE Foundation
This 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 […]
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Lamar 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 […]
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Held 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 […]
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In 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 […]
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Together, the US, UK, and Australia EHE foundations team up to strengthen the force against EHE. This group provides a quarterly update, which is led by the UK and includes research news, patient and fundraising stories, and much more! Click here to view the most recent edition of our online EHE newsletter, The Pledge.
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Jane Gutkovich, a founding member of The EHE Foundation and fierce EHE advocate, was a guest on World Cancer Day 2023 in the podcast Patient from Hell. Jane speaks with Samira Daswani in an episode entitled “Navigating Uncertainty, Making Decisions in the Absence of Data, Advocating & Caregiving”. Jane’s journey resonates with many people who […]
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