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 call to anyone in the area who could join us for a few hours. We were thrilled to meet this small group of people living with EHE, representing the largest EHE patient meetup held in the U.S. ever!

Verena L., from Germany, was in town presenting at the SPAGN conference. Kayla A., from Virginia, USA, and Carlos K., from the Netherlands, were also in town to attend the SPAGN conference. Victoria J., who lives locally, also joined the group for an afternoon of connection. 

It was a special surprise for Maggie to be seated next to Carlos during the SPAGN meeting. Upon realizing Maggie was there representing The EHE Foundation, Carlos exclaimed, “I have EHE!” and then explained that his subclavicular tumor was removed about five years ago. Shocked to have met another person with EHE just by chance, Maggie insisted he join the meetup on Sunday.

Embarking on a career in advocacy to improve the healthcare system for people with rare diseases, Kylah attended the entire SPAGN conference and made meaningful connections to spark her journey. At our meetup, she explained that her motivation stemmed from an arduous journey to find a way to balance her disease progression and pain. 

At 86, Victoria was the most senior of the people who came to the meetup, and we all expected her to have the longest story of living with EHE. Well, looks can be deceiving–Victoria was the most newly diagnosed of our group, receiving her diagnosis just 6 months ago! She reflected on her afternoon with us and said, “Maybe it’s the placebo effect, but I feel much better today than I have in weeks. Meeting Denise and other people with EHE has made a big difference.”

Maggie, Director of Development and Communication for The EHE Foundation, has lived with EHE for 14 years. She was stunned that meeting fellow EHE patients in person took that long. She exclaimed, “For me, this meetup was the most important part of the weekend. I feel more connected to the EHE community than ever!” Maggie promises to lead the efforts to plan more of these.

We want to encourage our community to reach out to those who live near you who have EHE. Even if it’s a few hours away, time spent with people who know what you’re going through is well worth the effort! Keep an eye on our website for