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Latest EHE News, Events and Research
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 […]
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 […]
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.
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 […]
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 […]
Results of a Phase 2 Trial of Trametinib in Advanced EHE
Dr. Schuetze will provide an overview of the rationale for treatment of EHE with trametinib, an oral inhibitor of the MEK kinase; the trial design of 10015/SARC033; and the results of the primary and secondary study endpoints. The presentation will also include an update on exploratory investigation of blood-based biomarkers including hemoglobin, C-reactive protein, and […]
Retrospective study from Charité–Universitätsmedizin Berlin, Germany
A new retrospective study from Charité–Universitätsmedizin Berlin describes 41 people with EHE treated at the center between 1997 and 2022, offering a single-center picture of EHE presentation and outcomes. It was published in the Journal of Cancer Research and Clinical Oncology in July 2026. In this report, women made up the majority of cases (61%), […]
EHE Foundation Welcomes Two New Board Members
We are pleased to welcome two new members to our Board of Directors: Amy Gilmore, CPA, and Dinesh Bande, MBBS, MD, MBA, FACP. Both bring extensive experience, leadership, and passion to our mission. As the leading global non-profit dedicated to finding effective treatments and a cure for EHE, we are grateful that they are lending […]
EHE Community Celebrates Sarcoma Awareness Month
Building awareness. Finding community. Many thanks to everyone who joined in for Sarcoma Awareness Month this July! By sharing photos and content, you helped raise awareness of sarcomas, like EHE. Wear Yellow Wednesday, EHE T-Shirt Tuesday, and Sunflower Sunday were just a few of the ways our community showed up and spread the word about […]