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Latest EHE News, Events and Research
New Study Uncovers Unexpected Role for AMPK in EHE
A project funded by the EHE Foundation, the EHE Rare Cancer Charity (UK), and the EHE Rare Cancer Foundation Australia, and led by Dr. Ryan Kanai in the Lamar Lab, was recently published in Cancers, revealing a surprising new role for AMPK in controlling the growth of EHE cells. Dr. Kanai set out to find […]
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EHE Advocates Unite to Navigate Complexities of Drug Development
We are thrilled to share a new publication that includes participation of EHE advocacy organizations: “How to foster new treatment development in ultra-rare tumours? Joint EMA-EORTC multi-stakeholder workshops on ultra-rare sarcomas as a model for rare cancers.” Leaders of the EHE Rare Cancer Charity (UK), the EHE Foundation, and EHE ITALIA Associazione Non Solo Laura […]
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Preclinical Evidence Supporting the Therapeutic Potential of Statins in EHE
In 2022, the EHE Foundation funded the Lamar Lab’s project entitled ‘Use of Pre-clinical EHE Models to Identify Druggable Pathways to Treat EHE,’ with the goal of identifying FDA-approved drugs that can be repurposed to treat EHE. By looking for drugs that are already FDA-approved, ideally, positive pre-clinical findings could be more rapidly translated to […]
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EHE Advocates Join Forces to Fund Multi-National Research Expansion
As partners in EHE research to find better treatments for people with EHE, the EHE Rare Cancer Charity (UK), the EHE Foundation, and EHE ITALIA Associazione Non Solo Laura ODV are excited to share the expansion of the multi-national collaborative research project “The generation and characterization of patient-derived models of EHE to assess the activity […]
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The Pledge: Edition 41, Q2 – April-June, 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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What You Need to Know About Tissue Donation
By Seth Haddix, PhD | EHE Biobank Coordinator When patients are thinking about surgery, a new biopsy, or other procedure, their minds are filled with decisions and worry. Tissue donation isn’t usually top of mind, and for more common cancers, it is not something we think about as a priority. For an ultra-rare cancer like […]
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Welcome New Board Member John McFadden, Ph.D., CRNA, APRN
The EHE Foundation was founded by patients, for patients. Continuing that tradition, we aredelighted to announce that EHE patient John McFadden, Ph.D., CRNA, APRN, has joined ourBoard of Directors. With more than 35 years of experience in health care, Dr. McFadden has held positions as anurse executive, hospital and university program accreditation surveyor, faculty member, […]
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Giving Tuesday is November 28th
During the busy holiday season, The EHE Foundation asks that you join us in celebrating Giving Tuesday, not just on Tuesday, November 28th, but throughout the month of November. All proceeds will support our vision: a world where EHE is easily diagnosed and treatable. Retailers are bombarding us with Black Friday and Cyber Monday advertisements. Let […]
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Spotlight on Young Investigator Nicholas Scalora, Advancing the Science Behind EHE
The EHE Foundation is proud to have awarded the 2023 Fellowship Travel Grant to Nicholas (Nick) Scalora, a 5th year graduate research assistant in the Tanas Laboratory, at the University of Iowa, where the team studies the role of the Hippo pathway in sarcomas. Dr. Munir Tanas, expert pathologist and researcher, was first author of […]
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