For Patients

EHE Mental Health Awareness

Navigating the Mental Health Challenges of an EHE Diagnosis and Treatment

By The EHE Foundation / May 30, 2024 / Comments Off on Navigating the Mental Health Challenges of an EHE Diagnosis and Treatment

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 important to acknowledge these challenges and find […]

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EHE patients' voices inform paper on sirolimus for the treatment of EHE.

EHE patients’ voices inform paper on sirolimus for the treatment of EHE.

By The EHE Foundation / March 15, 2024 / Comments Off on 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

Science Saturday: Patient-Powered EHE Research

By The EHE Foundation / March 13, 2024 / Comments Off on 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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Rare Disease Day - February 29, 2024

Rare Disease Day 2024

By The EHE Foundation / March 8, 2024 / Comments Off on 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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TEAD Talk with David Casimir

TEAD Talk – The Pursuit of a Treatment and Cure for EHE

By The EHE Foundation / July 12, 2023 / Comments Off on TEAD Talk – The Pursuit of a Treatment and Cure for EHE

Thanks to David Casimir, PhD, JD, for his informative patient-level presentation on June 17, 2023, that addressed the questions: What is the Hippo pathway and TEAD? How do they relate to EHE? How are they being used to develop EHE treatments? How do these treatments move from the laboratory, through clinical trials, to patient care? […]

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Scanxiety

Scanxiety

By Maggie Cameron / May 23, 2022 / Comments Off on Scanxiety

What is scanxiety? Scanxiety describes the apprehension felt by people with cancer as they wait for their next scan. It’s a form of anticipatory anxiety. Scans are like emotional roulette. You’re trying really hard not to worry about the unknown, but your body has other plans. Recognizing the Signs of Scanxiety Symptoms of scanxiety vary […]

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