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Latest EHE News, Events and Research
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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Research Roundtable: Advocacy in Action
In late January, 2025, EHE advocacy leaders from The EHE Foundation, EHE Rare Cancer Charity UK, and EHE ITALIA Associazione Non Solo LAURA ODV coordinated a joint meeting with expert clinicians and researchers in Amsterdam, The Netherlands. Stakeholders from Italy, the United Kingdom, and the United States reviewed progress on ongoing collaborative research programs and explored key research […]
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Hanna Lab at Purdue University: ‘When cells in the body stop following the rules, cancer can take hold.’
You met Jason Hanna, PhD, at the 2025 EHE Global Patient Conference, where he highlighted work his lab is undertaking in EHE. We are thrilled to share a recent publication in Molecular Oncology from the Hanna Lab at Purdue University, highlighting their findings from a study focused on the YAP1-TFE3 subtype of EHE. The YAP1-TFE3 […]
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Exciting Progress in EHE Research – Powered by Patients
We are thrilled to share a new publication, “EHE cell cultures are a platform for mechanistic and therapeutic investigation,” made possible by a partnership between the University of Iowa and the EHE Foundation. Under the leadership of Dr. Munir Tanas, Nicholas Scalora, PhD, and colleagues in the Tanas Lab sought to develop long-term EHE cell […]
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Uniting for a Cure: A New Chapter in the Fight Against EHE
FOR IMMEDIATE RELEASE Hobart, WI – October 9, 2025 – The Center for Research and Analysis of VAscular Tumors (CRAVAT) Foundation has donated its resources to The EHE Foundation in a powerful alignment of vision and commitment to the people affected by epithelioid hemangioendothelioma (EHE) and the EHE scientific community. Founded in 2015 by Guy […]
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