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Latest EHE News, Events and Research
PUSH Project: Pushing Rare Sarcoma Beyond Hope
Under the umbrella of the Connective Tissue Oncology Society (CTOS), the Ultra-rare Sarcoma Working Group, a broad group representing the global sarcoma community, including clinicians, scientists, patient advocates, and non-profit organizations has come together to establish a consortium, PUSH, to collect and make the best use of all available evidence to facilitate the development of […]
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EHE patients’ voices inform paper on sirolimus for the treatment of EHE.
“The patient perspective on sirolimus for epithelioid hemangioendothelioma (EHE): results of a community survey highlighting the importance of equitable access to treatments” was published on February 25, 2024, in the scientific journal Frontiers in Oncology. In early 2023, EHE patient advocates surveyed the global EHE community to gain patients’ perspectives on sirolimus to generate information […]
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Science Saturday: Patient-Powered EHE Research
On Saturday, February 24, 2024, Denise Robinson, Director of Research provided an update to the global EHE community focused on ‘Patient-Powered EHE Research’. Denise highlighted research projects The EHE Foundation is funding and supporting through resources, and projects initiated by the foundation including the EHE Global Patient Registry and EHE Biobank. Denise highlights progress made […]
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Welcome New Board Member Guy Weinberg, MD
The EHE Foundation is delighted to announce that Guy Weinberg, MD, has joined our Board of Directors. Internationally recognized in the field of anesthesiology, he is, importantly, the father of an EHE patient, bringing a multifaceted expert and personal perspective to The EHE Foundation, helping us advance our mission to find effective treatments for this […]
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Rare Disease Day 2024
Rare Disease Day was February 29th, a very special rare day! We asked our community to help us build EHE awareness by submitting their EHE stories so that we could share them on our social media platforms and website to shine a light on EHE and rare diseases! Throughout the month, we shared the stories […]
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“Shakedown for Steve” Gives $20,000 in Memory of Steve Walsh, Jr.
What started as a GoFundMe page to help Steve Walsh with EHE-related medical expenses turned into a memorial as he lost his 10-month battle with EHE on September 22, 2023. From the Southside of Chicago, Steve is remembered for his love of life, sports, and the people closest to him. His sister, Jessica shared, “On […]
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2025 EHE Fun Run & Walk Raises More Than $90,000 for EHE Research!
This Spring, the EHE community showed up stronger than ever for the 2025 EHE Fun Run & Walk, raising an astounding $90,000+ to fund research aimed at improving outcomes in epithelioid hemangioendothelioma (EHE). This marks a record-breaking year for our signature awareness and fundraising event! Each year, the Fun Run & Walk brings together patients, […]
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ASCO 2025 Recap: Advancing Research to Conquer Cancer
Denise Robinson, EHE Foundation Executive Director and Director of Research, had the privilege of representing the Foundation at the 2025 ASCO Annual Meeting in Chicago, where tens of thousands of global oncology professionals gathered to share knowledge with a purposeful commitment to conquer cancer. The American Society of Clinical Oncology (ASCO) is the world’s leading […]
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The EHE Foundation Welcomes Two New Board Members
The EHE Foundation is proud to announce the addition of two new members to our Board of Directors: Hollace D. Leppert, DO, FACOI, and Krista Sheeley, BSN, RN. Both bring extensive healthcare experience, leadership, and passion to our mission. We are excited to welcome them to the EHE Foundation and look forward to their insight, […]
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