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Updated: April 18, 2025 A cancer diagnosis can be one of the most daunting experiences in life, not just physically, but mentally and emotionally as well. The journey through diagnosis, treatment, and everything in between often feels like a roller coaster, filled with uncertainty, fear, and a range of intense emotions. It’s essential to acknowledge […]
Read MoreWhat do you want others to know about EHE? “EHE is incredibly rare and I’ve never even learned how to say it or spell it! I was diagnosed over 5 years ago and had active chemo treatment during 2017 and 2021. I was incredibly blessed to live in a capital city with a lead EHE […]
Read MoreWhat do you want others to know about EHE? “EHE was silent for me. I was having chest pain and went to the ER thinking it was from stress, only to find out I had a rare disease. It was hard for me and my family to take in. I recommend always getting a second […]
Read MoreIn March Denise Robinson, Director of Research for The EHE Foundation attended the ESMO Sarcoma and Rare Cancers Congres 2024 in Lugano, Switzerland. This congress brought together world-renowned experts including researchers and clinicians, to present and discuss the latest advancements in the treatment of sarcomas and rare cancers. Topics ranged from the role of immune […]
Read MoreUnder 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 […]
Read More“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 […]
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