Latest EHE News, Events & Research

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

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

March 15, 2024

“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 […]

Read More
Science Saturday: Patient-Powered EHE Research

Science Saturday: Patient-Powered EHE Research

March 13, 2024

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 […]

Read More
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 […]

Read More
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 […]

Read More
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 […]

Read More
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 […]

Read More
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 […]

Read More
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.

Read More
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 […]

Read More

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 […]

Read More