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With the generosity, heart, and determination of the EHE community and the EHE Foundation Board of Directors, we raised more than $155,000 — and counting — for EHE Research this Giving Tuesday! In a world with so many urgent needs, we are profoundly grateful for how this community continues to show up for one another to advance our mission of finding treatments and a cure for EHE. Thank you!
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Latest EHE News, Events and Research
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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Highlights from CTOS 2024
In November, Denise Robinson, Executive Director and Director of Research attended the CTOS 2024 Annual Meeting in San Diego, CA. The Connective Tissue Oncology Society (CTOS), is a professional medical organization that brings together multi-disciplinary clinician-scientists, translational researchers, and advocates from all over the world to advance the treatment of sarcomas. Many of the world’s […]
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The Pledge: Edition 38, Q3 – July-September, 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 our online EHE newsletter, The Pledge.
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The EHE Foundation Welcomes Kristianne Oristian, PhD, as Director of Research & Engagement
The EHE Foundation is proud to announce the appointment of Kristianne (“Kristi”) Oristian, PhD, as our new Director of Research & Engagement. In this role, Kristi will work closely with Executive Director Denise Robinson, who previously led both organizational and research strategy, to advance the Foundation’s mission and strengthen our growing impact in the global […]
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Advancing EHE Research on the Global Stage: Highlights from CTOS 2025
The EHE Foundation had the privilege of attending the CTOS 2025 Annual Meeting, held November 12-15, in Boca Raton, Florida. The Connective Tissue Oncology Society (CTOS) is a global, professional medical organization of clinician-scientists, translational researchers, and patient advocates united by a single goal: advancing treatment of sarcomas. For the EHE community, this annual gathering […]
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The Pledge: Edition 42, Q3 – July-September, 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.
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