The HAEi Youngsters Advisory Group and HAE International have collaborated on this project to revamp our online presence – and we’re delighted with the results, and hope you like them too.

So why do this now? And what does it mean for us as a Youngsters Community? Let us start by going back in time.

The year is 2018. The place is the HAE Global Conference in Vienna, Austria. Those were some awesome times, especially because people were allowed to be together  (#thankyoucorona). This was the conference that saw the official launch of the HAEi Youngsters Community – and to do this, we created our own website and magazine (the Youngsters Voice) over the weekend. It was such an amazing activity to be a part of. We all worked together and let our creativity go wild!

Since then, the HAEi Youngsters Community has grown in numbers and enthusiasm. It has been such a joy to see our community developing and connecting more, especially now, and we felt the time was right to bring our webpage up to date.

Our goal was clear – to build on the great work already done by our Youngsters Community and make the website a tool that will serve the Youngsters Community even more.

So, “What is so different?” you might ask. The first update is obvious: A fresh new look. And behind the scenes, we’ve added a lot of new functionality as well as content.

“Events” has now joined the navigation tab, and from there you can really easily sign up for our HAEi Youngsters Online Meetups! The first one was held in November and was a lot of fun – we hope you’ll join us for a Meetup in the future!

You can read more about the members of the Youngsters Advisory Group under “Meet the team” and join the #togetherApart project. Another update is our easy to complete membership form that you’ll find under the “Join us” button. There is now no excuse for getting involved 😉 and we look forward to developing our membership and being able to keep in touch with Youngsters around the world.

And last, but definitely not least, we have the “Resources & Tools” tab. This is where you can find loads of helpful information; from tips and tricks for when you are travelling abroad, to how to talk to your friends and partners about HAE and much more.

We want to say a big thank you to HAE International, for helping us with implementing our vision and believing in the power of young HAE advocates. And to all of the youngsters in our global HAE community – this website is dedicated to all of you!

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