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to the HAEi Youngsters’ Community

Whether you are newly diagnosed, starting school, university, moving abroad, or starting a new job, this is the place for you. On this website, you can find resources and tools that can help you learn more about HAE. Whether you want to build awareness about HAE in your community, become an HAE advocate, or simply need a way to explain what HAE is at school – we have you covered!

Our goal is to learn, stay connected, grow our global community, share our experiences and have fun together!

Join us and together we can make memories to last us a lifetime!

The Youngsters Advisory Group


  • Anastasiia, 23, Russia: It’s essential to have people who can understand everything you’re going through

  • Rachel, 19, Brazil: This community makes us feel like we are belonging to a group that accept us, love us, help us the way we are

  • Michaela, 22, US: as a young adult with a rare illness, it’s easy to feel alone or lost. The Youngsters’ community gives me hope and faith to keep pushing forward. I definitely would not be where I am today without this community!

  • Dejan, 18, Macedonia: I am part of this wonderful family that cares and shares beautiful things with all of us.

  • Elizabeth, 22, US: It helps us all connect and share our stories.

  • Victoria, 20, Denmark: It’s like a family where you can be 100% yourself, be supported and understood even if you are a patient or a caregiver. It’s a very strong community of amazing passionate young people from all around the world advocating for HAE.

  • Facundo, 22, Argentina: It lets us know that we are not alone. Provides support to young people around the world who understand what we live.

  • Anna, 21, Brazil: We support, share experiences and care for each other in a world where few people understand what is it like to deal with HAE. The community makes us realize that we are not alone.

  • Ava, 14, US: The HAEi Youngsters’ Community is important because it gives an opportunity to get to know other people that are living through the same situation that you are. It’s a great way to meet other people that you have something in common with, and is a constant reminder that you aren’t alone.