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Latest EHE News, Events and Research
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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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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Poker Tournament in Memory of Brian Frank Raises $11,000
Earlier this month, Angela Osborn, along with numerous family and friends, gathered for a night of poker in Washington in order to honor her late brother Brian Frank. Along with the poker tournament, a silent auction was held, T-shirts and sweatshirts featuring Brian’s initials and birthdate were sold, and at the end of the evening, a staggering $11,000 […]
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Smoothie King Raises Money in Memory of Mandy O’Connor
Smoothie King in York, Pennsylvania, held its second fundraiser in memory of Mandy O’Connor on October 13. Sean and Nicky Krebs, Smoothie King franchisees and close friends of Mandy and Devin’s, once again donated 50 percent of their sales on what would have been Mandy’s 33rd birthday. Mandy died due to EHE on April 5, […]
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The Hershey Company Donates to EHE Research
The Hershey Company has made a generous donation to The EHE Foundation. The world-famous confections company in Pennsylvania gave $500 to support ongoing research efforts into the rare cancer. The Foundation would like to thank Hershey employee Serena Wang for the support. Serena was a personal friend of Mandy O’Connor, who died from EHE in […]
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