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

Ania

Hello! My name is Ania, I’m 13 years old and I live in the beautiful city of Szczecin in Poland.

I was diagnosed with HAE when I was 2 years old. I inherited it from my dad just like my brother and sister.
I am excited to be involved in the HAEi Youngsters’ Community. I can’t wait to work together and meet patients from all around the world.

If you want you can reach out to me on Instagram or Facebook 😊

Winona

Hello!

My name is Winona, I’m 23 years old and from South Africa. I inherited HAE from my mother and was diagnosed at the age of 6.

I’m excited to be part of a community where experiences can be shared and where we can learn from each other. I look forward to making new friendships and advocating for a better quality of life for people living with HAE.

Please feel free to contact me if you have any questions or just want to chat!

Jess

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.

Kamila

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!

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🙂

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 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!!