Meet the Team

Hi everyone, we are the HAEi Advisory Group and we are so happy to see you here!
You are always welcome to connect with us or send us a message

Nanna

I am from Denmark.

I am an HAE patient and was diagnosed when I was born. My dad is an HAE patient as well.

I have always felt very insecure about HAE. Always afraid of what others might think of me. Being a part of this fantastic community has helped me become more confident and open about my HAE. This community really helped me have a positive view of HAE. I hope it will do the same for you!

Welcome to the HAEi Youngsters Community – I hope to see you soon!

Feel free to contact me on Instagram or Facebook, if you have any questions;

Isabel

Hi all!
I’m Isabel from the US (though my mom is Chilean, I grew up in Costa Rica, and my family now lives in Victoria, Canada – so home, like this community, is a bit global). I’m excited to be a part of this community and hopefully help foster new connections.

I value the friendships I’ve made with the HAEi youngsters and am excited to contribute to making spaces to help you create some. 🙂
As part of my education, I’ll be living in Berlin, Buenos Aires, London, and Taipei within the next 2 years. If you’re in or near any of those cities, I’d love to meet up!

Hope everyone is doing well ❤️

Eirini

My name is Eirini (or Irene in English)

I’m an HAE patient from Greece and I was diagnosed at the age of 12.

Being the only one in my family with HAE, it’s been an amazing experience to get to meet other people and youngsters with the same disease.

I have gained so much confidence and pride in myself, I found the courage to step up and raise awareness in my country and internationally.

I am part of the HAEi Youngsters Committee and I want to help create a strong community, so no youngster feels alone or left out. The HAEi is constantly working to create a better future for all HAE patients and I’m proud to be a part of that.

I am always open to talk with any youngster, so don’t hesitate to text me at my social media and chat with me🙂

Hana

Hello HAE family!

My name is Hana and I’m from Cape Town, South Africa. I joined the HAEi community in 2018 after attending the Vienna Global conference where my life was forever changed by the amazing support and community. My struggles with HAE lead me to studying Medical Sciences so that I could help research rare diseases and hopefully one day help future patients.

I love being a part of this incredible and strong community and I’m always inspired by all of you!☺️

Let’s take control of our HAE together!

Dominika

Hi, I’m Dominika

I’m an HAE patient from Poland! I’m 23 years old.I was diagnosed when I was 4 years old. My dad, brother, and sister also have HAE. I love to spend time with my family and friends.

I have a Bachelor’s degree in Management of public institutions and PR. I am currently studying for my Master’s degree in Administration at the University of Szczecin.

I have participated in many national and international HAE meetings and conferences. HAEi helped me a lot in gaining confidence and in becoming a Regional Patient Ambassador in Poland.

Meeting so many youngsters in Frankfurt back in 2017 was an incredible experience.
I knew right then and there that being an HAE advocate is what I want to do someday! I am thrilled to start my journey by joining the HAEi Youngsters Advisory Group!

If you have any questions or need to talk – feel free to contact me on Instagram or Facebook.

Jacob

Hi everyone, my name is Jacob Collins, I am a 14-year-old HAE patient in Canada.

I am very excited to be a part of this global community, and I look forward to meeting you all in the future.
I am a High school student and I love being active in sports, especially boxing!! If I am not practicing my boxing techniques I probably have my nose in a book.
Some of my favorite books are Einstein his life and universe and Ali: A Life.
Keep an eye out for all the exciting things coming on the youngsters’ website soon 🙂 .

Stay safe everyone!!