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Latest EHE News, Events and Research
EHE Informational Bifold
During this past week, we have featured several touching stories of those affected by EHE (see below). These stories have one thing in common, which all EHE patients can relate to: there are no standard treatments for EHE. Money raised by The EHE Foundation during #Giving Tuesday (Nov 27th) will address this common issue and […]
Day of Giving – Tuesday, November 27, 2018
#GivingTuesday is a global movement to celebrate and encourage giving after Thanksgiving, Black Friday, and Cyber Monday. We are thrilled to announce that donations to The EHE Foundation will be DOUBLED on #GivingTuesday (Tues, Nov 27th) by our generous supporters. This is your chance to double your impact in helping those affected by this extremely rare cancer […]
3rd Annual EHE Virtual 5K Run/Walk
The EHE Foundation hosts an annual run/walk for all ages and abilities in April, which is EHE awareness month. This event is “virtual”, which means it can be done anywhere the participant is located. Participants are asked to complete the 5K during the last week of April. Registration includes a t-shirt, race bib, bracelet, and […]
Birthday Fundraisers Hosted by Facebook
Supporters continue to celebrate their birthdays (and other special occasions) by creating a fundraiser on Facebook to support The EHE Foundation. Facebook allows supporters to easily create the event, share their story, invite friends, and track their progress toward their goal. This convenient online tool has allowed many of our supporters to increase awareness while […]
A Day of Fun Celebrating the Life of Brian Frank
Brian Frank passed away from EHE on September 2, 2014 at the age of 28. Brian had only been sick for about 6 months and was not properly diagnosed until he passed. His family and friends, led by his mother, Darlene Frank, and his sister, Angela Osborn, organize an annual event in Brian’s memory, which […]
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 […]