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 19 years old and lives in Denmark, Scandinavia.

I am a HAE patient myself and I was diagnosed when I was born as my dad has HAE as well. I have always felt very insecure when it came to HAE and always been afraid of what others might think of me – but being a part of this amazing community has really helped me become more confident with HAE and more open about my HAE. Learning self-administration when I was 15-years old was something that helped me being in control of HAE, made me feel free and independent – something that also made me more comfortable with HAE. This community really helped me having a positive view on HAE, and as a part of the advisory group, I really hope this community will do the same for you! I believe that we in fellowship can create a better quality of life for youngsters with HAE and young caregivers!

Welcome to the community – hope to see you soon!

Until then, I would like to share my favorite quote with you: “Promise me you’ll always remember: Your braver than you believe, stronger than you seem, and smarter than you think”, from Winnie the Pooh

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 really value the friendships I’ve made with the HAEi youngsters and am excited to contribute to making spaces to help you create some:) I’m entering my 3rd year of university this fall (computer science/data science).

Coronavirus-willing, I’ll be living in Berlin, Buenos Aires, London and Taipei (or maybe San Francisco) in the next 2 years as part of my university degree, so 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🙂

Nathan

Hi I am Nathan,

I am a patient from Ecuador.

I recently graduated with a degree in marine biology and am interested in shark conservation and genetic research. Both my brother and father also have HAE. I have many talents, including playing on the Ecuadorian national women’s soccer team (before transitioning), teaching myself guitar, bass, ukulele and drums, and releasing a single in Ecuador which was played on the radio. I am currently focusing on making art and composing music with piano.

I am greatly involved in the youngsters’ community, after meeting so many youngsters at the summer camp in Frankfurt, I started appreciating HAEi as a family and seeing the importance of having an HAEi youngsters community, so I started advocating for it.

I love to play video games, and travel, and I’ve visited 13 countries and just moved to Mexico with my wife, my rescue dog and my cat.

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.

This year I was hoping to travel and visit HAE friends around the world, but COVID-19 cancelled those plans, I still plan on one day doing an HAE world tour! 😊

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. In my free time I love to spend time with my family and friends.

I have a Bachelor in management of public institutions and PR and I am currently studying my masters degree in Administration at the University of Szczecin. I have been taking part 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 was surprised to see that there are so many of us out there, but also very happy to know that there are people all around the world who know and understand what being a young person with HAE means.

I knew right then and there that being an HAE advocate is what I want to do one day! I am very happy to start my journey by join the HAEi Youngsters Advisory Group!

If you have any questions or you just need a 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 favourite books are: Einstein his life and universe and Ali:A Life.
Keep an eye out for all the exciting things coming on the website soon 🙂 .

Stay safe everyone!!
-Jacob