Hi everyone, 

HAE Scandinavia celebrated its 20-year anniversary on November 12-14, 2021 in Copenhagen, Denmark! Congratulations!!!  Nanna and Victoria, who recently joined the HAE Scandinavia board wanted to share their experience and tell us more about the event. Enjoy! 


Considering the global COVID-19 challenges, we are beyond grateful that it was possible for patients, caregivers, physicians, and pharma companies to get together again.

But not only did the HAE Scandinavia celebrate its 20th anniversary that weekend, but it was also the first conference where HAE Scandinavia arranged something special for young patients and young caregivers. The idea came from the two newest members of the board – Nanna Boysen and Victoria Schultz-Boysen. Both Nanna and Victoria have been a part of the HAEi Youngsters Community and have participated in various activities. Nanna is also a member of the HAEi Youngsters Advisory Group.

The girls agree that they have found a lot of support, understanding, and new lifelong friendships in the global HAE community. They hope that they can bring a lot of what they’ve experienced into the Scandinavian organization and help other young patients with HAE feel more connected.  – The 2021 HAE Scandinavia Conference in Copenhagen was a great start and we are all looking forward to the next time we can meet.

Here are some thoughts from the two new board members in HAE Scandinavia – Nanna Boysen and Victoria Schultz-Boysen, and what their hopes and dreams are when it comes to creating a young environment in Scandinavia.

Words from Nanna:

Being an HAE patient myself  I know that HAE comes with a lot of challenges but we do also gain a lot of strength. We all have our own stories and own experiences of how HAE has had an effect on our lives. I have been misdiagnosed by doctors and nurses and given the wrong treatment. I have in a long time during my childhood been afraid of being different from other children and therefore tried to hide my HAE. This meant that I didn’t like to go far away from home and my parents in case of an HAE attack. I had a  fear of not being close to medication because my friends would then no longer only see me but also my HAE – which made me uncomfortable and want to avoid these situations when I could. Today I am thankful for being able to treat myself as I’m not afraid of showing my HAE no more, and I have gained a lot more confidence with my HAE due to advocating for it and meeting so many young people with the same diagnosis! These are only small bites of what I have experienced and felt as an HAE patient. We all know HAE comes with a lot of feelings, thoughts but also questions and therefore I do believe that a young fellowship in HAE Scandinavia could help answer some of the questions and make young patients and caregivers feel understood.

The global HAE community and the HAEi Youngsters Community are where I felt at ease. Talking to other youngsters my age and sharing my experiences made me feel a part of something. I felt understood, knowing that there are other people going through similar things.

This has given me a whole new perspective on HAE as a disease and how I want to manage my HAE. Meeting other young patients and caregivers helps you learn a lot more about HAE. How different it can be but also similar in a way. Through sharing my experiences, I managed to build on my confidence and understand that it helps to talk instead of keeping things to yourself.

I can only speak for myself here, but these are the positive things about HAE. Being a patient doesn’t seem so bad when you have support, treatments, and a community.

I really hope that in Scandinavia, we can build a better environment for young patients and caregivers to share their experiences, feelings, thoughts, questions and support each other in learning more about HAE.

So that is one of my many hopes for HAE Scandinavia, to build a youngster-friendly environment where youngsters can meet, feel understood, and feel safe, so no one feels alone with this disease – it is a superpower we have!


Words from Victoria:

I have always been surrounded by HAE patients, who have been very passionate about HAE and wanted to make a change for all HAE patients worldwide. That inspired me and it became very natural for me to stand up and make a difference as well.

I joined the international HAEi Youngsters Community  as a caregiver and I have learned so much about HAE and what it is like to be young and live with such a life threatening disease as HAE.

Over time the HAE youngsters’ community has grown into a strong and rewarding forum where everyone freely can share their thoughts, feelings, hopes, dreams, up’s and down’s with HAE – there is always plenty of understanding and good advice to receive.

Not least, I have got to know so many amazing people, created friendships for life, got more knowledge about different countries and cultures, and of course I have learned so much more about HAE.

I have also become aware of how I as a caregiver can be the best support possible, keep calm even in intense situations and at the same time, I have learned so much more about myself as a human being. I have been inspired to be the best support possible by all the awesome and strong people I know with HAE and their caregivers. They are all true fighters and I’m deeply fascinated by the joy of life that is shining from within them and their ability to fight for a better future with HAE.

I really hope that our first meeting for young patients and caregivers in Scandinavia will be the beginning of a very bright and exciting future for the HAE Scandinavia community for young people. That we, by getting to know each other better will create a space to share our different experiences, thoughts, feelings, dreams and hopes freely for the future with HAE, ourselves, and each other as a community so that we can turn HAE into our strength.

I wish for a Scandinavian community where we completely understand each other, give and receive good advice, get new ideas together and are having fun! I really wish that for Scandinavia because I think it would be truly amazing! It is so important to know that you are not alone – we are here with open arms and really hope to see more Scandinavian youngsters in the future 🙂

Thank you for reading this article, you can find more information on the HAE Scandinavia website or on Instagram.

Nanna and Victoria