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Amy is living with progressing epithelioid hemangioendothelioma (EHE). Diagnosed in 2010, she has had a challenging journey, including a liver transplant, removal of lung tumors, and various systemic therapies.
“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 […]
Read MoreOn 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 […]
Read MoreThe 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 […]
Read MoreRare 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 […]
Read MoreWhat 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 […]
Read MoreWe are pleased to announce The EHE Foundation’s 2024 Research Grants Program awards, totaling $307,400, as part of our ongoing commitment to advance our mission to find effective treatments and a cure for EHE. Made possible by 2023 Giving Tuesday gifts, these grants support novel translational research projects that aim to identify and accelerate the […]
Read MoreAt The EHE Foundation, we are committed to finding a cure for epithelioid hemangioendothelioma (EHE), an ultra-rare and potentially aggressive cancer that affects one in a million people. Every contribution helps us advance groundbreaking research, support patients, and foster collaboration among clinicians and researchers worldwide. There are two impactful ways you can support our mission: […]
Read MoreOn September 10, 2024, The EHE Foundation held a virtual meeting of our Scientific & Medical Advisory Board (SMAB). The meeting aimed to welcome new members, review current research projects, and discuss future needs and goals to advance EHE research. The meeting began with a warm welcome to new members of the SMAB: Tom Chen, […]
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