My First HAEA Summit

This time last year, I was at my very first HAEA Summit, and it was arguably the best thing I did after being diagnosed. Being surrounded by so many people who either had Hereditary Angioedema, or took care of someone with it, was life changing. It made me realize that I am not alone.

If you don't know what the HAEA is, it is the Hereditary Angioedema Association, and they do a lot of work raising awareness and helping those of us with the disease. Truly, they are amazing. My allergist is actually the one who told me about them and the summit they have, and they encouraged me to go. They hold this summit every two years. It is in a different location every time. But the best part is that they give out "scholarships" to a bunch of people. All you have to do is fill out the application. Luckily, I was able to get a scholarship, and so my travel was paid for. They also gave out gift cards to help pay for meals for the weekend.

The 2025 Summit

The 2025 Summit I went to was in Baltimore, Maryland. I stayed in the most beautiful hotel by the water! I was really nervous to go, because I didn't know anyone, other than two people I had met on TikTok. And if you know me, you know I'm incredibly shy and am actually horrible at meeting new people. But I don’t know what it is about the HAE community, but they are some of the nicest, most welcoming people I've ever met.

Day 1: Checking in

The first day, I remember, was just everybody getting there and checking in. At check-in, I got this awesome bag that had a bunch of goodies inside. I got three water bottles, a pair of sunglasses and some other things from the different companies that were there.

That night we were free to do what we wanted. I chose to go eat dinner at the hotel restaurant and read my book. After that night we did have an itinerary for the weekend to follow.

Day 2: Exhibition and educational presentations

The first morning we got up and got to go see all the different booths that were set up by all of the different companies that research and make the different medications that treat HAE. That part was so cool to me, because as someone who was newly diagnosed and still learning, I had no idea that there were so many people fighting for people like me. All the booths had different gifts/keepsakes for us and they also just gave us a bunch of information. The people were so nice also.

We also attended a presentation each day. They were both extremely informative about Hereditary Angioedema. It helped us understand our body a little more and see what kind of research is being done. My favorite part was hearing from the doctors who specialize in Hereditary Angioedema. Because they have seen so much and understand that this disease does not fit into a box and it's not one-size-fits-all. They also did a Q&A, where we were allowed to write a question and the doctors answered as many as they could with the time we had.

Day 3: Celebrations and closing

One of my favorite parts of the weekend though was the last night. They had an amazing dinner, and a fun performance. And then, it was like a dance party for us all to just have fun with all the new friends we made. After that weekend, I came home much more confident in my new diagnosis, but also with more friends that I could chat with that would understand the things I am going through.

Final thoughts

I had so much fun at my first HAEA summit, and I can't wait for the next one. I would encourage all people with HAE or caregivers of HAE patients, to go to at least one.