TISSUE DONATION IS CRITICAL TO FIND TREATMENTS! Click here to learn more.
EMPOWER YOURSELF WITH KNOWLEDGE
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 MoreJoin 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 […]
Read MoreIkena 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 MoreThank 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 MoreThe 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 […]
Read MoreFrom April 11–13, 2025, representatives of The EHE Foundation participated in the 15th Annual Conference of the Sarcoma Patient Advocacy Global Network (SPAGN), marking SPAGN’s first conference in the United States. The National Cancer Institute (NCI) co-hosted the event, underscoring the importance of international collaboration in sarcoma advocacy. Denise Robinson commented, “As a long-time supporter […]
Read MoreFive people living with EHE, representing three countries, gathered on Sunday, April 13, 2025, for lunch and camaraderie, marking the first-ever meetup of its kind in the United States. The EHE Foundation was in Washington, D.C. that same weekend to participate in the Sarcoma Patient Advocacy Global Network (SPAGN) Annual Conference, and put out the […]
Read MoreEvery year, on the last day of February, the world comes together to recognize Rare Disease Day—a global movement to raise awareness, promote research, and celebrate the strength of those living with rare conditions. This year, February 28, 2025, marked another powerful opportunity to elevate voices from across the rare disease community. At The EHE […]
Read More