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Latest EHE News, Events and Research
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 […]
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 […]
“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 […]
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.
Science Saturday: Patient-Powered Research
Join The EHE Foundation’s Director of Research, Denise Robinson, as she explains the power of patients to advance research into EHE. What is patient-powered research, why does it matter, and how can you contribute? Join us to learn what’s happening in EHE research and the pivotal role you play in advancing our understanding of this […]
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 […]
ASCO 2026: Conquering Cancer on the Global Stage
What an amazing ASCO 2026 for so many people affected by cancer. The ASCO Annual Meeting in Chicago brought tens of thousands of global oncology professionals together with the same goal – to change lives. EHE Foundation Executive Director Denise Robinson was there to represent the EHE community, raise awareness of patients’ needs, and connect […]
A Historic Day of Learning, Connection, and Community in Boston
For a cancer as rare as EHE, connection is something we intentionally create. On Saturday, April 11, 2026, EHE Foundation and Dana-Farber Cancer Institute hosted an inaugural EHE Education Day, bringing together patients, loved ones, clinicians, researchers, and advocates for a day of learning, discussion, and in-person connection. With more than 25 people in attendance, […]
Advocacy in Action: ESMO Sarcoma and Rare Cancers Congress & EHE Research Meeting
In March, EHE Foundation was represented at two important meetings in Europe focused on sarcoma, rare cancers, and EHE research. These gatherings were invaluable opportunities to connect with clinicians, researchers, and fellow advocates working to improve care, deepen understanding, and advance progress for people affected by EHE. Executive Director Denise Robinson attended on behalf of […]