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In the News
In March Denise Robinson, our Director of Research joined Dr. Scott Okuno, Chief Medical Officer for SARC (Sarcoma Alliance for Research through Collaboration) to talk about EHE research and patient advocacy. Their discussion beautifully lays out the challenges of facilitating research in the ultra-rare disease landscape. Denise and Dr. Okuno also talked about the growth […]
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Jane Gutkovich, a founding member of The EHE Foundation and fierce EHE advocate, was a guest on World Cancer Day 2023 in the podcast Patient from Hell. Jane speaks with Samira Daswani in an episode entitled “Navigating Uncertainty, Making Decisions in the Absence of Data, Advocating & Caregiving”. Jane’s journey resonates with many people who […]
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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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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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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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The EHE Foundation has completed its 2022 EHE Research Grant cycle and is pleased to share that it has awarded the largest grants funding in its history – totaling $291,600 grants to three outstanding applicants. This amazing sum is complemented by additional private funds totaling $250,000, bringing this year’s total research investment to $541,600 USD. […]
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