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May is National Cancer Research Month, a time to honor the scientists, clinicians, and collaborators who are moving us closer to effective treatments and a cure for epithelioid hemangioendothelioma (EHE). Research is the EHE Foundation’s highest priority in our mission to find effective treatments and ultimately a cure for EHE. With no standard treatment available, […]
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 MoreOn January 31, 2025, expert clinicians, researchers, and global advocacy leaders convened in Amsterdam, the Netherlands, to meet with the European Medicines Agency (EMA) and EORTC, exploring strategies to develop new treatments for ultra-rare sarcomas as a model for ultra-rare tumors. The discussion focused on lessons learned from efforts to secure regulatory approval for sirolimus […]
Read MoreThe York EHE Foundation hosted its 1st Annual Golf Outing to benefit the EHE Foundation and Cleveland Clinic on Friday, July 17, 2015. The event was a huge success raising over $17,000 for our cause! Mandy O’Connor Mandy Elizabeth O’Connor was born in Seoul, South Korea, but became the daughter of Paul and Virginia […]
Read MoreOn April 22, 2014, Delaney was diagnosed with an extremely rare form of cancer called Epithelioid Hemangioendothelioma, also known as EHE. This form of cancer has absolutely zero funding or attention from outside sources because so few people are affected by it. Every penny of research has been funded by EHE patients, families, and friends. […]
Read MoreGeorgiana has a very special place in the hearts of the people who knew her. She had an aggressive type of EHE that at the time of diagnosis already spread to many sites of her body. She underwent very tough treatments, harsh chemo, radiation, surgery, but was one of the most positive enthusiastic members of […]
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