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Latest EHE News, Events and Research
REGISTRATION IS NOW CLOSED FOR OUR 4th ANNUAL EHE VIRTUAL 5K BUT T-SHIRTS STILL AVAILABLE!
Although most participants already completed their 5K, registration for the 4th Annual EHE Virtual 5K will remain open until all shirts are sold. Click here for more information. 100% of the donations and profits from this event will be dedicated to EHE research. We hope you’ll join us to make a difference as we look […]
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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 […]
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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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Strengthening Global Collaboration in Sarcoma: Highlights from the 2025 SPAGN Annual Conference
From 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 […]
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EHE Foundation Hosts EHE Patient Meetup in Washington, D.C.
Five 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 […]
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Rare Disease Day 2025: Shining a Light on EHE and the Power of Awareness
Every 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 […]
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