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Latest EHE News, Events and Research
Welcome New Board Member John McFadden, Ph.D., CRNA, APRN
The EHE Foundation was founded by patients, for patients. Continuing that tradition, we aredelighted to announce that EHE patient John McFadden, Ph.D., CRNA, APRN, has joined ourBoard of Directors. With more than 35 years of experience in health care, Dr. McFadden has held positions as anurse executive, hospital and university program accreditation surveyor, faculty member, […]
Giving Tuesday is November 28th
During the busy holiday season, The EHE Foundation asks that you join us in celebrating Giving Tuesday, not just on Tuesday, November 28th, but throughout the month of November. All proceeds will support our vision: a world where EHE is easily diagnosed and treatable. Retailers are bombarding us with Black Friday and Cyber Monday advertisements. Let […]
Spotlight on Young Investigator Nicholas Scalora, Advancing the Science Behind EHE
The EHE Foundation is proud to have awarded the 2023 Fellowship Travel Grant to Nicholas (Nick) Scalora, a 5th year graduate research assistant in the Tanas Laboratory, at the University of Iowa, where the team studies the role of the Hippo pathway in sarcomas. Dr. Munir Tanas, expert pathologist and researcher, was first author of […]
Highlights from CTOS 2023
Last week EHE Foundation Director of Research Denise Robinson, attended the Connective Tissue Oncology Society (CTOS) 2023 annual meeting in Dublin, Ireland. Every year, physicians, scientists, and advocates from around the world come together to advance patient care and increase knowledge in connective tissue tumors. EHE is one of over 100 subtypes of sarcoma, which […]
EHE Global Research Convened in Milan, Italy
In September 2023, EHE Director of Research Denise Robinson met over three days in Milan, Italy, with patient advocates and researchers to discuss EHE research funded by this community. Exciting progress is happening in this multi-national collaborative research under the leadership of Dr. Silvia Stacchiotti and Dr. Nadia Zaffaroni (Istituto Nazionale Tumori IRCCS, Milan), and […]
Funded Research Project Update: Use of pre-clinical EHE models to identify druggable pathways to treat EHE
Investigator: John Lamar, PhD, Albany Medical College Dr. Lamar was awarded a 3-year grant by The EHE Foundation in 2022, that aims to identify FDA-approved drugs that inhibit EHE cell growth, and then test them in pre-clinical mouse models for the treatment of EHE. What does this mean for patients? This could mean a shorter […]
Science Saturday: EHE Research Progress & Momentum
Join the EHE Foundation for a special Science Saturday on Rare Disease Day, February 28, 2026, 11:00 am – 12:30 pm ET. This virtual event is designed for anyone affected by EHE who wants an up-to-date view of the EHE research landscape. This free, interactive presentation will highlight Foundation-led research, global scientific advances, and the […]
Reflecting on 2025 and Looking Ahead With Purpose
For the global EHE community, 2025 brought challenges, resilience, and momentum. Grounded in connection and a shared commitment to progress in EHE, we look back with emotion, appreciation, and gratitude, and in 2026, we look forward with determination and hope.
Translating molecular mechanisms of EHE to improve patient outcomes
Scientists know that most EHE tumors are caused by specific genetic changes called gene fusions. In most people with EHE, two genes, WWTR1 and CAMTA1, are abnormally fused. In a smaller number of cases, a different fusion involving YAP1 and TFE3 is present. In a recent review published in Critical Reviews in Oncology/Hematology, the authors […]