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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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Cancer Identity Session #4: Integrating Cancer Identity Into the Self
We are pleased to present the fourth session with Dr. Tamara Vesel, Chief of Division of Palliative Care, Clinical Associate Professor of Medicine and Pediatrics, Tufts University School of Medicine and Dr. Maeve Baechler, LIFE Cancer Coaching. Continuing the discussion, “Who am I now? Integrating the cancer identity into the self,” Drs. Vesel & Baechler […]
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Science Saturday – Highlights and Progress in EHE Research
Join Hugh Leonard (EHE Rare Cancer Charity, UK) and Denise Robinson (The EHE Foundation) as they highlight EHE advancements and ongoing research around the world. As an ultra-rare sarcoma (cancer) community, research and awareness relies strongly on patients and advocates to keep moving forward until there are toward better treatments and eventually, a cure. Find […]
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Giving Tuesday 2022 a Great Success
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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