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Latest EHE News, Events and Research
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 […]
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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 […]
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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 […]
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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 […]
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Giving Tuesday
Giving Tuesday is celebrated each year on the Tuesday following Thanksgiving and after the widely recognized Black Friday and Cyber Monday. It is recognized as an international day of giving at the beginning of the holiday season and is fueled by the power of social media. The day known as “#GivingTuesday” proved to be a […]
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The Pledge: Edition 41, Q2 – April-June, 2025
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 the online EHE newsletter, The Pledge.
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What You Need to Know About Tissue Donation
By Seth Haddix, PhD | EHE Biobank Coordinator When patients are thinking about surgery, a new biopsy, or other procedure, their minds are filled with decisions and worry. Tissue donation isn’t usually top of mind, and for more common cancers, it is not something we think about as a priority. For an ultra-rare cancer like […]
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Advancing EHE Research at the 9th Annual YAP/TAZ and TEADs Workshop in Telluride, Colorado
The 9th Annual YAP/TAZ and TEADs: At the Crossroads of Cancer workshop took place June 9-13, 2025, in the stunning mountain town of Telluride, Colorado. Hosted by the Telluride Science and Innovation Center and organized by Drs. Guy Weinberg and John Lamar, this unique gathering brought together top-tier researchers and clinicians from academia and industry […]
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