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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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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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The Pledge: Edition 33, Q2 – April-June, 2023
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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