In brief

  • HAE organization name: HAEi Youngsters Community
  • Number of members in your organization (at 1 Jan 2021):  451

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 8 members from 7 different countries: Nanna (Denmark), Hana (South Africa), Isabel (Canada), Nath (Ecuador), Eirini (Greece), Pedro (Brazil), 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 positive changes have happened for young people with HAE, as a result of the HAEi Youngsters Community, since the first hae day :-) to now?

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, both off- and online through the years and they have helped in bringing us together. We’ve managed to keep in touch, even more so now considering the challenges COVID-19 threw at everyone.

We launched our new website dedicated to young people, living with HAE and the online meetups that have been a passion project for everyone on the youngsters advisory group.

What is the biggest achievement for the HAEi Youngsters community, since the first hae day :-)?

One of the biggest achievements for the youngsters community is that we launched our new website dedicated to young people, living with HAE.

This is our way of ensuring youngsters are not alone and can always join us.

On this website 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.

What support/ resources has the Youngsters Community used from HAEi? What has HAEi helped the Youngsters Community to achieve?

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 the amazing opportunities to develop skills as advocates via the Youngsters Advocacy Workshop and the HAEi Advocacy Academy.

We are also very happy to be able to work with Nevena Tsutsumanova, HAEi’s Operations manager, she has been our mentor, helping us with whatever we need and the person supporting the community from the first day.

Your Next Step… What does the HAEi Youngsters Community want to achieve for Youngsters with HAE by 2030?

We want to achieve many things with the HAEi Youngsters Community by 2030. 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.