Latest EHE News, Events & Research

Jenni Kovach & Medha Deoras-Sutliff

An important message from Jenni Kovach, President, The EHE Foundation Board of Directors

October 5, 2022

I am writing today to share an organizational change to The EHE Foundation. After four years as a part-time contractor, Medha Deoras-Sutliff has ended her engagement with the foundation to pursue other opportunities. Medha will continue to provide her services to the foundation until the end of November to ensure a smooth transition.  Medha came […]

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Kim Young running the Maine Marathon on October 2, 2022

Congrats to Kim Young for Finishing the Maine Marathon on October 2, 2022.

September 20, 2022

Kim Young was diagnosed with EHE in March 2021, and Oct 2nd, 2022 was the second time she ran the Maine Marathon in support of The EHE Foundation. She is a champion for creating awareness for EHE, and we are grateful for her support. Kim teamed up with the Maine Marathon to allow the EHE […]

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ESMO 2022 Congress

ESMO 2022 Congress

September 13, 2022

EHE champions were on the global stage on September 9th, at the ESMO2022 Congress in Paris, France. ESMO, the European Society of Medical Oncology, is a leading professional organization for medical oncology education and information. Dr. Silvia Stacchiotti, a leading EHE clinical expert (Italy), and Hugh Leonard, Chair of Trustees of the EHE Rare Cancer […]

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The Pledge: Edition 29, Q2 – April-June, 2022

The Pledge: Edition 29, Q2 – April -June, 2022

September 6, 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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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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Scanxiety

Scanxiety

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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