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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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ASCO 2025 Recap: Advancing Research to Conquer Cancer
Denise Robinson, EHE Foundation Executive Director and Director of Research, had the privilege of representing the Foundation at the 2025 ASCO Annual Meeting in Chicago, where tens of thousands of global oncology professionals gathered to share knowledge with a purposeful commitment to conquer cancer. The American Society of Clinical Oncology (ASCO) is the world’s leading […]
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The EHE Foundation Welcomes Two New Board Members
The EHE Foundation is proud to announce the addition of two new members to our Board of Directors: Hollace D. Leppert, DO, FACOI, and Krista Sheeley, BSN, RN. Both bring extensive healthcare experience, leadership, and passion to our mission. We are excited to welcome them to the EHE Foundation and look forward to their insight, […]
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Celebrating Progress and Hope: 2025 EHE 360 Global Patient Conference Recap
The EHE Foundation is proud to celebrate the success of the 2025 EHE 360 Global Patient Conference, a truly transformative event that brought together the global EHE community for learning, collaboration, and connection. Over 200 participants from a record 25 countries were united by a common mission to drive progress in EHE research, treatment, and […]
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