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Latest EHE News, Events & Research
On May 28, 2024, Ikena Oncology announced they are discontinuing the development of IK-930. We share your frustration and disappointment and understand the devastating impact felt by patients. Following this announcement, we met with Ikena to impress upon them the urgency and importance that patients deriving benefits from IK-930 continue to have access to the […]
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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 […]
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Publication of The Pledge quarterly newsletter is led by the EHE Rare Cancer Charity (UK). EHE patient advocacy groups from around the globe. provide content including 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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What 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 […]
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What 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 […]
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In 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 […]
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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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“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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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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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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