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The EHE Foundation
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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Together, the US, UK, and Australia EHE foundations team up to strengthen the force against EHE. This group provides a quarterly update, which is led by the UK and includes 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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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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McKenna Helm was a fun, caring, empathetic, poised young woman that brightened the life of everyone she touched. She was an integral part of a large extended family, and she loved each and every member of the family unconditionally. To her friends, she was a ray of sunshine on the cloudiest days. As competitive as […]
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Our vision at The EHE Foundation is to live in a world where EHE is easily diagnosed and treatable. The support of our community directly impacts every single person diagnosed with EHE. Patients, donors, doctors and researchers help us make that vision a reality. During our Giving Tuesday 2022 campaign, we featured these “Champions of […]
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