Latest EHE News, Events & Research

Guy Weinberg, MD

Welcome New Board Member Guy Weinberg, MD

March 11, 2024

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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Rare Disease Day - February 29, 2024

Rare Disease Day 2024

March 8, 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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Shakedown for Steve raised $20k for EHE research!

“Shakedown for Steve” Gives $20,000 in Memory of Steve Walsh, Jr.

March 4, 2024

What started as a GoFundMe page to help Steve Walsh with EHE-related medical expenses turned into a memorial as he lost his 10-month battle with EHE on September 22, 2023. From the Southside of Chicago, Steve is remembered for his love of life, sports, and the people closest to him. His sister, Jessica shared, “On […]

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Kate Czyzewski

Katherine Czyzewski

February 27, 2024

What do you wish others knew about EHE “I wish people knew that even though it is rare, there are humans behind this diagnosis. Though I personally am not exhibiting symptoms at this time, scanxiety is something that is a constant cloud over our family. The unpredictable nature of EHE is difficult and different for […]

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Courtney Bieghler

Courtney Bieghler

February 20, 2024

Who or what inspires you most to keep fighting for a cure, and why? “I fight for my family. My husband and my four-year-old daughter. She is too young to understand what cancer is and I need her to know that her mother is going to fight to be here for when she graduates from […]

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The Pledge (Q4 2023)

The Pledge: Edition 35, Q4 – October-December, 2023

February 6, 2024

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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IK-930 Orphan Drug Designation

IK-930 Receives Orphan Drug Designation for EHE

January 10, 2024

Ikena Oncology has shared that on December 14th, 2023, the Food and Drug Administration (FDA) granted Orphan Drug Designation to IK-930 for the treatment of epithelioid hemangioendothelioma (EHE). We are excited about this designation following initial positive data from the IK-930 Phase I clinical trial published in Ikena’s November 9th press release. What does this […]

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Giving Tuesday 2023 Raises over $160k for EHE Research

December 15, 2023

Thank you! Together, we raised more than $160,000 to fund critically needed research into epithelioid hemangioendothelioma (EHE). Rare cancers, like EHE, lack sufficient governmental and pharmaceutical funding sources available for more common cancers. Your donations support our work to level the playing field. A special thanks to: Thank you for joining us in our fight […]

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2023 EHE Foundation Research Grant Awards

2023 EHE Foundation Research Grant Awards Announcement

December 12, 2023

The EHE Foundation awards research grants to advance our mission to find treatments and a cure for EHE. With the guidance of our Research Committee, Advisory Board, and expert reviewers, we are pleased to announce the research grants awarded in 2023:   Ajaybabu Pobbati, PhD, Cleveland Clinic Lerner Research Institute Harnessing FDA-approved drugs to gain mechanistic […]

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The Pledge

The Pledge: Edition 34, Q3 – July-September, 2023

December 11, 2023

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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