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Latest EHE News, Events and Research
Good Vibes for McKenna, A Celebration Benefiting Cancer Research
Thanks to “Good Vibes for McKenna, A Celebration Benefiting Cancer Research” for hosting an EXTRAORDINARY two-day event held January 21st and 22nd in Fort Myers, Florida. We truly appreciate their $25,000 donation to The EHE Foundation to support EHE research and for creating much needed EHE awareness! The event featured a fine dining experience and […]
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Champions of EHE
Our vision at The EHE Foundation is to live in a world where EHE is easily diagnosed and treatable. The support of our community directly impacts every single person diagnosed with EHE. Patients, donors, doctors and researchers help us make that vision a reality. During our Giving Tuesday 2022 campaign, we featured these “Champions of […]
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Cancer Identity Session #4: Integrating Cancer Identity Into the Self
We are pleased to present the fourth session with Dr. Tamara Vesel, Chief of Division of Palliative Care, Clinical Associate Professor of Medicine and Pediatrics, Tufts University School of Medicine and Dr. Maeve Baechler, LIFE Cancer Coaching. Continuing the discussion, “Who am I now? Integrating the cancer identity into the self,” Drs. Vesel & Baechler […]
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Science Saturday – Highlights and Progress in EHE Research
Join Hugh Leonard (EHE Rare Cancer Charity, UK) and Denise Robinson (The EHE Foundation) as they highlight EHE advancements and ongoing research around the world. As an ultra-rare sarcoma (cancer) community, research and awareness relies strongly on patients and advocates to keep moving forward until there are toward better treatments and eventually, a cure. Find […]
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Giving Tuesday 2022 a Great Success
Thank you for helping us reach our $150,000 goal on Giving Tuesday to fund the 2023 Research Grants Program! A special thanks to the 374 donors, 16 people affected by EHE who held successful fundraisers, and the countless individuals that shared their personal EHE story and our mission. We are grateful for your contributions and […]
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The EHE Foundation Attends CTOS 2022
With sincere gratitude to each patient who has contributed to the EHE Biobank, patient-driven research was on the global stage! Denise Robinson, The EHE Foundation Director of Research and Patty Cogswell, EHE Biobank Coordinator, presented a poster on the EHE Biobank on behalf of The EHE Foundation last month at the CTOS 2022 Annual Meeting […]
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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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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 […]
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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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