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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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Funded Research Project Update: Use of pre-clinical EHE models to identify druggable pathways to treat EHE
Investigator: John Lamar, PhD, Albany Medical College Dr. Lamar was awarded a 3-year grant by The EHE Foundation in 2022, that aims to identify FDA-approved drugs that inhibit EHE cell growth, and then test them in pre-clinical mouse models for the treatment of EHE. What does this mean for patients? This could mean a shorter […]
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Funded Research Project Update: Repurposing an FDA-approved Drug for EHE Treatment
Investigator: Ajaybabu Pobbati, PhD, Cleveland Clinic – Lerner Research Institute In 2022, The EHE Foundation funded a grant to Dr. Pobbati for research that looks at a library of current FDA-approved drugs that act as TAZ-CAMTA1 (TC) or TEAD inhibitors, for use in EHE. What does this mean for patients? This could mean a shorter […]
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Championing Our Cause: How Patients Support Fundraising
Join us for EHE Community Connections as we discuss “Championing Our Cause: How Patients Support Fundraising.” Collaborate with other patients and caregivers to explore the most creative and effective fundraising ideas. Together, let’s talk about how to better engage our own community of donors, create awareness and raise money for this one-in-a-million cancer! This workshop […]
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