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Latest EHE News, Events and Research
EHE Research Grants – Your Support Makes a Big Impact
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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TEAD Talk – The Pursuit of a Treatment and Cure for EHE
Watch 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 […]
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2023 EHE 360 EMPOWERING PATIENTS Global Patient Conference
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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SARC Talk Podcast Featuring EHE Research & Patient Advocacy
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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The Pledge: Edition 31, Q4 – October-December, 2022
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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Podcast Shares a Challenging Diagnostic Journey
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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Strengthening Global Collaboration in Sarcoma: Highlights from the 2025 SPAGN Annual Conference
From April 11–13, 2025, representatives of The EHE Foundation participated in the 15th Annual Conference of the Sarcoma Patient Advocacy Global Network (SPAGN), marking SPAGN’s first conference in the United States. The National Cancer Institute (NCI) co-hosted the event, underscoring the importance of international collaboration in sarcoma advocacy. Denise Robinson commented, “As a long-time supporter […]
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EHE Foundation Hosts EHE Patient Meetup in Washington, D.C.
Five people living with EHE, representing three countries, gathered on Sunday, April 13, 2025, for lunch and camaraderie, marking the first-ever meetup of its kind in the United States. The EHE Foundation was in Washington, D.C. that same weekend to participate in the Sarcoma Patient Advocacy Global Network (SPAGN) Annual Conference, and put out the […]
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Rare Disease Day 2025: Shining a Light on EHE and the Power of Awareness
Every year, on the last day of February, the world comes together to recognize Rare Disease Day—a global movement to raise awareness, promote research, and celebrate the strength of those living with rare conditions. This year, February 28, 2025, marked another powerful opportunity to elevate voices from across the rare disease community. At The EHE […]
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