Latest EHE News, Events & Research

2022 Research Grant Cycle Update

2022 EHE Research Grant Cycle Update

August 2, 2022

A pillar of The EHE Foundation’s mission is to seek treatments and a cure for EHE by pursuing scientific research, and one way we do this is by funding the most impactful EHE research projects possible. To support our mission, the Foundation issues a call for research grant proposals each year from the global scientific […]

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EHE Foundation Advisory Board

The EHE Foundation Advisory Board Annual Meeting

July 17, 2022

The EHE Foundation’s Advisory (Ad) Board met with the Foundation’s research team in June for their annual meeting. The Ad Board is composed of nine renowned clinicians and researchers who generously give their time and talents to advise The Foundation, in addition to the countless hours they spend during their ‘day jobs’ with patients, research […]

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The Pledge Q1 2022

The Pledge: Edition 28, Q1 – Jan-Mar, 2022

June 8, 2022

Together, the US, UK, and Australia EHE foundations team up to strengthen the force against EHE. This group provides a quarterly update, which is led by the UK and includes 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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May 23, 2022

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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Carmela Valdivieso

May 16, 2022

What do you want others to know about EHE? “Getting to know other cases through the EHE Foundation, I realized that, even though all cases are very different, uncertainty is something we all share. I have my hopes on the community built around EHE, where I no longer feel alone and trust that there will […]

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Linda Beaulieu

May 13, 2022

What do you want others to know about EHE? “EHE changed how I see life. I received the diagnosis of EHE one year ago, lung removed and a heart bypass. It was gone! But then it returned this Christmas on my trachea. I am now on medication and hoping that the next scan will be […]

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Tonja Pektas

April 28, 2022

What do you want others to know about EHE? “The mental battle with EHE is monumental! The watching and waiting and the not knowing what it’s going to do in my body! That new pain in my ribs….could it be EHE? That weird reaction I had to something…could that be caused by EHE? I have […]

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Rick Harrington

April 27, 2022

What do you want others to know about EHE? “I was completely shocked when I received my “stage 4 lung cancer” diagnosis. I only had a slight cough–how could that be? But then the doctors were not sure what kind of cancer it was, so they started to perform different biopsies. It took several weeks […]

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Michelle Hughes

April 22, 2022

What do you want others to know about EHE? “Being diagnosed with EHE mere weeks after the birth of my third child was shocking and soul crushing. My head filled with so many negative thoughts after hearing “stage 4,” “metastatic” and “incurable.” I’m a 35 year old, healthy female…or so I thought. I read a […]

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Marta Iglesias

April 18, 2022

What do you want others to know about EHE? For me EHE is learning to live with the uncertainty, pain, and chronic fatigue. In the same day you can feel really well and then suddenly feel really bad. Although you may feel perfectly fine, the pain can hit you like a hammer. It’s also lonely […]

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