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Latest EHE News, Events and Research
Fueling Hope Through Research: Celebrating National Cancer Research Month
May is National Cancer Research Month, a time to honor the scientists, clinicians, and collaborators who are moving us closer to effective treatments and a cure for epithelioid hemangioendothelioma (EHE). Research is the EHE Foundation’s highest priority in our mission to find effective treatments and ultimately a cure for EHE. With no standard treatment available, […]
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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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The Pledge: Edition 39, Q4 – October-December, 2024
Publication of The Pledge quarterly newsletter is led by the EHE Rare Cancer Charity (UK). EHE patient advocacy groups from around the globe provide content including research news, patient and fundraising stories, and much more. Click here to view the most recent edition of the online EHE newsletter, The Pledge.
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Ultra-Rare Pushes Forward at the EMA
On January 31, 2025, expert clinicians, researchers, and global advocacy leaders convened in Amsterdam, the Netherlands, to meet with the European Medicines Agency (EMA) and EORTC, exploring strategies to develop new treatments for ultra-rare sarcomas as a model for ultra-rare tumors. The discussion focused on lessons learned from efforts to secure regulatory approval for sirolimus […]
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The EHE Foundation Appoints New Executive Director
On behalf of the Board of Directors of The EHE Foundation, Jenni Kovach, Board President has announced the appointment of Denise Robinson as the new Executive Director for the Foundation. Like many people, Denise had not heard of EHE until her friend was diagnosed in 2017 with an aggressive form of the disease. She soon […]
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The Pledge: Edition 37, Q2 – April-June, 2024
Publication of The Pledge quarterly newsletter is led by the EHE Rare Cancer Charity (UK). EHE patient advocacy groups from around the globe. provide content including 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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Advancing our Mission, Representing EHE Patients at ASCO 2024
Our Interim Executive Director and Director of Research, Denise Robinson, recently represented epithelioid hemangioendothelioma (EHE) patients at the 2024 ASCO Annual Meeting in Chicago, Illinois, where nearly 40,000 global oncology professionals convened. The American Society of Clinical Oncology (ASCO), is the world’s leading organization for oncology, bringing together advocates, healthcare providers, and related professionals to […]
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