The EHE Foundation

Guy Weinberg, MD

Welcome New Board Member Guy Weinberg, MD

By The EHE Foundation / March 11, 2024 / Comments Off on Welcome New Board Member Guy Weinberg, MD

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

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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Shakedown for Steve raised $20k for EHE research!

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

By The EHE Foundation / March 4, 2024 / Comments Off on “Shakedown for Steve” Gives $20,000 in Memory of Steve Walsh, Jr.

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

By The EHE Foundation / February 27, 2024 / Comments Off on Katherine Czyzewski

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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The Pledge (Q4 2023)

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

By The EHE Foundation / February 6, 2024 / Comments Off on The Pledge: Edition 35, Q4 – October-December, 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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IK-930 Orphan Drug Designation

IK-930 Receives Orphan Drug Designation for EHE

By The EHE Foundation / January 10, 2024 / Comments Off on IK-930 Receives Orphan Drug Designation for EHE

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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