Update from the HAEi Youngsters’ Community
The last few months have flown by! Our LEAP 2025 youngsters are working hard on their projects with their Member Organizations, and we’ve been busy launching the next round of applications for the LEAP class 2026! By the time you read this, the applications will have closed, and we’ll be looking forward to welcoming a fresh new group of students to make up our class of 2026.
The HAEi Youngsters’ Advisory Group put together a great youngsters track at the 2025 HAEi Regional Conference EMEA. 91 young people came together for a fun, engaging, and inspiring program, and you can read all about the track and the inspiring work of the youngsters here.
Members of the HAEi Youngsters’ Advisory Group got the chance to meet at the 2025 HAEi Regional Conference EMEA. We are planning the next round of our Youngsters Community Social Media internship and great new episodes of our HAE Let’s Talk! Podcast. Stay tuned to our newsletter – sign up here – and Instagram account @haeiyoungsters.
‘We’re proud to celebrate three exceptional Youngsters’ Advisory Group members who are moving forward into new opportunities and adventures. Thank you, Isabel, Jess, and Dominika, for everything you’ve contributed—your passion, ideas, and dedication have shaped our community. We look forward to cheering you on in this next stage of your journey.’
– Nevena Tsutsumanova, Manager, Events and Special Projects
On behalf of Global Perspectives, Nevena got the time to talk to one of the recent HAEi Youngsters Advisory Group alums, Dominika, and asked about her journey with the Youngsters’ Community and the Youngsters’ Advisory Group (YAG). You can also read about what’s next for Dominika in her own words, just after the interview. The Youngsters’ Community isn’t saying goodbye but ‘see you soon’ as Dominika will always be an honorary part of, and a good friend to, this community.
Do you remember the moment you joined the YAG, and what was your motivation for it?
I remember when the YAG was created and started doing activities for Youngsters. I was so impressed and in disbelief that living with HAE can look like that. I then wanted to be a part of that. It’s easy to become a Member of YAG if you are involved in advocacy.
How has being a part of YAG and the Youngsters’ Community changed you over the years?
I’m a different person than I was in 2017, before the Summer Camp in Frankfurt. Working with so many amazing, creative, diverse, and inspiring young people has contributed to my personal growth. I have always been a shy person, and talking with others stressed me out.
‘However, my HAE family made me feel special, even when speaking in a language that isn’t my first. I had the chance to meet people from different backgrounds, experiences, and cultures, which opened my eyes to the world.’
Did being part of YAG prompt you to be more involved with your Member Organization in Poland?
Being part of YAG definitely prompted me to become more involved in my organization, Swelling Beautifully. I showed them they could count on me, and they gave me opportunities to participate in conferences, workshops, and camps. It’s always a two-way street.
What are the top 3 things you remember and want to share with the community?
- You need to remember that HAEi Youngsters’ Community is a family. You can reach out to us whenever you need, even if it’s to talk or ask for an opinion. We are here for you.
- Having HAE doesn’t make you “different”; it makes you special.
- Always remember to be You. You can always be honest, and you won’t be judged.
What’s the best trip you remember, and what made it so special?
I can’t say just one trip was the best because every trip I took with HAEi and the YAG was the best. They were always full of love and laughter. One that was really special for me was the 2023 HAEi Regional Conference EMEA in Munich. On the first day of the conference, it was my birthday, and on the Youngsters Track everyone sang me a happy birthday. It’s a small thing, but it made me feel really special. It showed other Youngsters that we do care for each other, and that the community is more than just a few people meeting. It’s family.
My time with the HAEi Youngsters – Dominika’s story
Growing up as a teenager with HAE was definitely a difficult experience. My whole life, I thought only my brother and I had HAE. That was until I got a call from Michał Rutkowski of the Pięknie Puchnę (Swelling Beautifully Association) in Poland, asking if I was interested in attending a Youngsters Summer Camp in Frankfurt. I was in total shock when I saw almost 70 youngsters with HAE. It really opened my eyes! There were so many amazing young people facing the same challenges as me. It felt like we had known each other for years.
During the 2018 HAE Global Conference in Vienna, I had a chance to help create the first HAEi Youngsters magazine and website. We talked about our personal experiences and made a plan to help people with and without medications. It was awesome to bring so many people together from every corner of the world for such an important cause.
These two events showed me how a young person can be involved in advocacy. As a result, I became a member of the Youngsters Advisory Group (YAG) in 2020. I’m an introvert, so I was afraid that it would be a challenge for me. I was so wrong. Since the first meeting with the YAG, I felt part of a family. With HAE, you might sometimes feel different, but in this community, you can feel ‘normal’.
Since 2020, I have taken part in many events and activities. I represented Youngsters at the 2022 Global Leadership Workshop in Frankfurt and then the 2024 meeting in Copenhagen. I also attended the 2023 HAEi Regional Conference EMEA. We exchanged knowledge, experiences, and contacts. We have also met with international experts and listened to other people’s stories. Knowing we are not alone has changed everything for many. Every HAEi meeting brings a huge smile to my face! It gets me so excited for the future. I have made so many friends I can relate to and contact when times are difficult. As a YAG member, I had the chance to help get others involved in advocacy, for example, as a Social Media Intern.
I’ve also been fortunate enough to take part in the amazing LEAP project. Thanks to Nevena and Debs Corcoran, who run the program, I learnt skills which helped me create the first HAE Poland Youngsters Summer Camp. It was focused on getting to know each other and learning about your HAE. We held a session with two HAE specialists and a psychologist. Working together in groups allowed us to create the first-ever HAE Youngsters Polska Magazine! For our second event, we wanted to do something different. That’s why we invited HAEi’s Director, Research, the amazing and creative Debs Corcoran. We wanted to offer Polish Youngsters a fresh perspective on aspects related to HAE. For example, Debs focused on showing them how they can lead a less stressful life just by learning to manage their time.
My time with the HAEi Youngsters’ Community has come to an end. I’ll continue my advocacy journey. Working with young people and seeing how passionate they are was a really amazing experience. I’m so grateful that I had a chance to be a part of it. What a journey it has been. I loved every second of it.
Still haven’t joined the HAEi Youngsters’ Community?
The HAEi Youngsters’ Community is free to join and is open to young people with HAE, family members, caregivers, and friends who are part of their country’s HAE MO and are between 12 and 25 years old.
>> Head over to our website, youngsters.haei.org, and join us ☺