HAEi Youngsters

HAEi also supports the HAEi Youngsters’ Community, the next generation of HAE advocates around the world. Their goals are to learn, stay connected, grow our global community, share experiences and have fun together!

In brief

  • HAEi Youngsters’ Community
  • Number of members (at Feb 2022): 490

Tell us 3 fun or interesting things about the HAEi Youngsters’ community.

  1. The international youngsters’ community met for the very first time in 2016 at the HAE Global Conference in Madrid.
  2. The current HAEi Youngsters Advisory group has 6 members from 6 different countries: Nanna (Denmark), Hana (South Africa), Isabel (Canada), Eirini (Greece), Jacob (Canada) and Dominika (Poland)
  3. The HAEi Youngsters’ Community is a wonderful network of young, friendly, and amazing people!

About the HAEi Youngsters’ Community

What changes have happened for young people with HAE, as a result of the HAEi Youngsters’ Community?

One of the biggest positive changes for young people with hereditary angioedema (HAE) since the first hae day :-) is that there is now an active HAEi Youngsters’ Community.

We started small with a WhatsApp group after the 2016 HAE Global Conference in Madrid, and we are so proud that our community has been growing ever since. There have been many youngster-specific events and projects, both off- and online through the years and they have helped in bringing us together. We’ve managed to keep in touch, which has been even more important considering the global challenges thrown at everyone recently.

Tell us about some of the HAEi Youngsters’ Community achievements

One of the biggest achievements for the youngsters’ community is that we launched our new website dedicated to young people living with Hereditary Angioedema (HAE).  This is our way of ensuring youngsters are not alone and can always join us. 

On this website – youngsters.haei.org – youngsters can find resources and tools that can help them learn more about HAE. Whether they want to raise awareness about HAE in their community or become an HAE advocate, or simply need a way to explain what HAE is at school – we’ve got them covered!

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

Another very important achievement for us is the HAEi Youngsters Online Meet-ups project we launched in November 2020. This project is all about getting together online and having a friendly chat about things that are important to us – we talk about everything.

What are you most proud of being able to do for HAEi Youngsters Community?

We are most proud of the ability to connect and support young people with HAE. We are grateful we have a global community that knows what it is to live with HAE and we get excited every time we have a new member, because for us that means one more friend.

How does HAEi support the Youngsters’ Community?

HAEi has been by our side since the beginning, and we are beyond grateful for all the opportunities we’ve had to be able to meet in person.

Over the years there have been a number of youngster-specific activities like the Youngsters Summer Camp in 2017, we now have a dedicated Youngsters track at the HAE Global Conferences and virtual workshops, and last but not least the online meet-ups that HAEi helps us host.

We’ve also had amazing opportunities to develop skills as advocates via the Youngsters Advocacy Workshop and the HAEi Advocacy Academy.

We are very happy to be able to work with Nevena Tsutsumanova, HAEi’s Operations manager. Nevena is our mentor and has been the person steering us in the right direction from day one!

What does the HAEi Youngsters’ Community want to achieve for young people with HAE in the future?

We want to achieve many things with the HAEi Youngsters’ Community! One thing for sure is getting together in person, it has been too long!

We want to continue to grow in enthusiasm and in numbers.

We want to be the next generation of HAE advocates.