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Latest EHE News, Events and Research
SARC Talk Podcast Featuring EHE Research & Patient Advocacy
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 […]
The Pledge: Edition 31, Q4 – October-December, 2022
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.
Podcast Shares a Challenging Diagnostic Journey
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 […]
Good Vibes for McKenna, A Celebration Benefiting Cancer Research
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 […]
Champions of EHE
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 […]
Cancer Identity Session #4: Integrating Cancer Identity Into the Self
We are pleased to present the fourth session with Dr. Tamara Vesel, Chief of Division of Palliative Care, Clinical Associate Professor of Medicine and Pediatrics, Tufts University School of Medicine and Dr. Maeve Baechler, LIFE Cancer Coaching. Continuing the discussion, “Who am I now? Integrating the cancer identity into the self,” Drs. Vesel & Baechler […]
Retrospective study from Charité–Universitätsmedizin Berlin, Germany
A new retrospective study from Charité–Universitätsmedizin Berlin describes 41 people with EHE treated at the center between 1997 and 2022, offering a single-center picture of EHE presentation and outcomes. It was published in the Journal of Cancer Research and Clinical Oncology in July 2026. In this report, women made up the majority of cases (61%), […]
EHE Foundation Welcomes Two New Board Members
We are pleased to welcome two new members to our Board of Directors: Amy Gilmore, CPA, and Dinesh Bande, MBBS, MD, MBA, FACP. Both bring extensive experience, leadership, and passion to our mission. As the leading global non-profit dedicated to finding effective treatments and a cure for EHE, we are grateful that they are lending […]
EHE Community Celebrates Sarcoma Awareness Month
Building awareness. Finding community. Many thanks to everyone who joined in for Sarcoma Awareness Month this July! By sharing photos and content, you helped raise awareness of sarcomas, like EHE. Wear Yellow Wednesday, EHE T-Shirt Tuesday, and Sunflower Sunday were just a few of the ways our community showed up and spread the word about […]