In the News

EHE Advocates Unite to Navigate Complexities of Drug Development

By The EHE Foundation / September 19, 2025 / Comments Off on EHE Advocates Unite to Navigate Complexities of Drug Development

We are thrilled to share a new publication that includes participation of  EHE advocacy organizations: “How to foster new treatment development in ultra-rare tumours? Joint EMA-EORTC multi-stakeholder workshops on ultra-rare sarcomas as a model for rare cancers.”  Leaders of the EHE Rare Cancer Charity (UK), the EHE Foundation, and EHE ITALIA Associazione Non Solo Laura […]

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Andrei Ivanescu, Denise Robinson, and Hugh Leonard - Global EHE Advocates

EHE Advocates Join Forces to Fund Multi-National Research Expansion

By The EHE Foundation / September 16, 2025 / Comments Off on EHE Advocates Join Forces to Fund Multi-National Research Expansion

As partners in EHE research to find better treatments for people with EHE, the EHE Rare Cancer Charity (UK), the EHE Foundation, and EHE ITALIA Associazione Non Solo Laura ODV are excited to share the expansion of the multi-national collaborative research project “The generation and characterization of patient-derived models of EHE to assess the activity […]

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EHE Researchers at YAP/TAZ and TEADs Conference in Telluride, CO

Advancing EHE Research at the 9th Annual YAP/TAZ and TEADs Workshop in Telluride, Colorado

By The EHE Foundation / July 17, 2025 / Comments Off on Advancing EHE Research at the 9th Annual YAP/TAZ and TEADs Workshop in Telluride, Colorado

The 9th Annual YAP/TAZ and TEADs: At the Crossroads of Cancer workshop took place June 9-13, 2025, in the stunning mountain town of Telluride, Colorado. Hosted by the Telluride Science and Innovation Center and organized by Drs. Guy Weinberg and John Lamar, this unique gathering brought together top-tier researchers and clinicians from academia and industry […]

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SPAGN discussion panel on clinical trials in rare sarcomas

Strengthening Global Collaboration in Sarcoma: Highlights from the 2025 SPAGN Annual Conference

By The EHE Foundation / May 6, 2025 / Comments Off on 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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PUSH meets with EMA

Ultra-Rare Pushes Forward at the EMA

By The EHE Foundation / February 15, 2025 / Comments Off on 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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EHE Research Roundtable

Research Roundtable: Advocacy in Action

By The EHE Foundation / February 11, 2025 / Comments Off on 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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