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Latest EHE News, Events and Research
The EHE Foundation and NORD® Launch Natural History Study of Epithelioid Hemangioendothelioma (EHE)
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 […]
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 […]
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 […]
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 […]
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 […]
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.
Farzaad D.
Farzaad’s Story: Facing EHE with Faith, Strength, and Positivity For Farzaad, the first signs that something was wrong were easy to notice, but impossible to explain. Around May 2025, he began experiencing swelling in his face that did not feel normal. He also found himself becoming short of breath more easily. Over time, other changes […]
Advocacy in Action: ESMO Sarcoma and Rare Cancers Congress & EHE Research Meeting
In March, EHE Foundation was represented at two important meetings in Europe focused on sarcoma, rare cancers, and EHE research. These gatherings were invaluable opportunities to connect with clinicians, researchers, and fellow advocates working to improve care, deepen understanding, and advance progress for people affected by EHE. Executive Director Denise Robinson attended on behalf of […]
Across Borders and Histologies: Rethinking Endpoints for Vascular Sarcoma Trials
Following the publication of results from a phase 2 study of eribulin in two vascular sarcomas, angiosarcoma and EHE, Dr. Tom Chen of National Taiwan University College of Medicine shared commentary in Clinical Cancer Research. He praised the investigators for their collaborative study while also pointing to important considerations for future research. Although angiosarcoma and […]