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Latest EHE News, Events and Research
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 […]
Preclinical Evidence Supporting the Therapeutic Potential of Statins in EHE
In 2022, the EHE Foundation funded the Lamar Lab’s project entitled ‘Use of Pre-clinical EHE Models to Identify Druggable Pathways to Treat EHE,’ with the goal of identifying FDA-approved drugs that can be repurposed to treat EHE. By looking for drugs that are already FDA-approved, ideally, positive pre-clinical findings could be more rapidly translated to […]
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 […]
Exploring Histotripsy as a Treatment Option for EHE
Join us for an educational discussion on histotripsy, an emerging treatment for liver tumors. A multi-disciplinary team of experts from Dana-Farber Cancer Institute and Brigham and Women’s Hospital will explain how histotripsy works, who may benefit, and what patients should consider when evaluating this and other treatment options for hepatic EHE. This session, led by […]
The Pledge: Edition 41, Q2 – April-June, 2025
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.
What You Need to Know About Tissue Donation
By Seth Haddix, PhD | EHE Biobank Coordinator When patients are thinking about surgery, a new biopsy, or other procedure, their minds are filled with decisions and worry. Tissue donation isn’t usually top of mind, and for more common cancers, it is not something we think about as a priority. For an ultra-rare cancer like […]
A Historic Day of Learning, Connection, and Community in Boston
For a cancer as rare as EHE, connection is something we intentionally create. On Saturday, April 11, 2026, EHE Foundation and Dana-Farber Cancer Institute hosted an inaugural EHE Education Day, bringing together patients, loved ones, clinicians, researchers, and advocates for a day of learning, discussion, and in-person connection. With more than 25 people in attendance, […]
Advocacy in Action: ESMO Sarcoma and Rare Cancers Congress & EHE Research Meeting
In March, EHE Foundation was represented at two important meetings in Europe focused on sarcoma, rare cancers, and EHE research. These gatherings were invaluable opportunities to connect with clinicians, researchers, and fellow advocates working to improve care, deepen understanding, and advance progress for people affected by EHE. Executive Director Denise Robinson attended on behalf of […]
Across Borders and Histologies: Rethinking Endpoints for Vascular Sarcoma Trials
Following the publication of results from a phase 2 study of eribulin in two vascular sarcomas, angiosarcoma and EHE, Dr. Tom Chen of National Taiwan University College of Medicine shared commentary in Clinical Cancer Research. He praised the investigators for their collaborative study while also pointing to important considerations for future research. Although angiosarcoma and […]