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In the News
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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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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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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Thanks to “Good Vibes for McKenna, A Celebration Benefiting Cancer Research” for hosting an EXTRAORDINARY two-day event held January 21st and 22nd in Fort Myers, Florida. We truly appreciate their $25,000 donation to The EHE Foundation to support EHE research and for creating much needed EHE awareness! The event featured a fine dining experience and […]
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Thank you for helping us reach our $150,000 goal on Giving Tuesday to fund the 2023 Research Grants Program! A special thanks to the 374 donors, 16 people affected by EHE who held successful fundraisers, and the countless individuals that shared their personal EHE story and our mission. We are grateful for your contributions and […]
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