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


Hello everybody,

My name is Jessica Bogoyevitch, and I am a 23-year-old living in Australia. I am one of the five HAE patients in my family spanning across 3 generations and have been involved in my local member organization since I was a teenager. I have been lucky enough to further my journey into advocacy by attending different meetups and workshops through HAEi Youngsters.

I am so excited to further my involvement in this wonderful community that has given me so much comfort and love and helped me grow in ways I never thought imaginable. It has pushed me to achieve so much in my life, from completing a bachelor’s degree in marine science to becoming a swim teacher, where I am able to be a part of so many little lives.


Hi Youngsters 🙂
My name is Kamila, I’m 18 years old and I am a caregiver for my little brother Santiago who is an HAE patient. We are from Peru, and we love to spend time together listening to the music we like, go for a walks, cook and try new recipes.
Santiago was 9 years old he was diagnosed with HAE, and in 2020 we joined the HAE Peru. We felt very grateful to be part of HAE Peru, when we joined the organization we felt happy and relieved! It was the first time in three years that we were able to feel confident and secure to care him and learn how to control his HAE. So I would like to share and give that same feeling with more HAE patients who doesn’t know how to live with it.

I am really happy to join the HAEi Youngsters’ community and be part of the advisory group!  I can’t wait to work together so more patients can experience a pacefull life, and just as I enjoy sharing my days with my brother, they can enjoy their lives with those they love the most 💙!

It doesn’t matter if you are a patient, family member or caregiver, talk in English of Spanish, you are always welcomed to contact me!


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;


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 ❤️


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🙂


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!


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.


Hi everyone, my name is Jacob Collins, I am a 15-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!!