This input is dated May 2021

In brief

  • Name for organization: HAE Scandinavia – Norway
  • 439 members at 1 Jan 2021
  • Name of approved HAE treatments:
    • Berinert
    • Cinryze
    • Firazyr
    • Ruconest
    • Tranexamic acid

Fun/interesting facts

  • Norway introduced salmon sushi to Japan. While sushi is absolutely a Japanese invention, they did not use salmon in the dish until it was suggested by a Norwegian delegation in the 1980s.
  • Norway is home to Hell, Yes, really! A little over one thousand Norwegians can say they live in Hell. The small village is within walking distance of Trondheim’s international airport and even has its own train station.
  • Norway gave the world the cheese slicer. You’re welcome, world! The cheese slicer was invented way back in 1925 by Thor Bjørklund and has become a staple of all Scandinavian kitchens, and many others around the world. While a lot of cheese is sold pre-sliced, many people still buy blocks of cheese and use the invention that has changed little in almost 100 years.

What positive changes have happened for people with HAE, in your country, from 2012 to now?

The positive changes that have happened for people with HAE in Norway includes starting the HAE Scandinavia organization. Norway joined forces with Denmark and Sweden to advocate for HAE patients in Scandinavia. There is good information available about HAE in Norwegian on the organization’s website, and we are on Facebook and Instagram. We also host both small local gatherings every other year and big conferences for everybody. At the national hospital in Oslo there is a HAE centre with knowledgeable doctors who collaborate with other doctors in Europe. The patients are now informed about treatment options and the necessity of treating every attack early. Everybody has access to medication, and many have learned to treat themselves, getting their independence back and increased quality of life.

What is the biggest achievement for people with HAE, in your country, from 2012 to now?

The biggest achievements are founding HAE Scandinavia and the many major patient conferences we have successfully held. These brought together both patients and health are professionals, making it possible to educate, inspire and share knowledge on many levels.

What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?

The event we are most proud of is the big HAE Scandinavia conference in Norway in 2019, which was our largest so far (with 120 participants). We have also had several articles about HAE in both local and national newspapers and magazines.

What support/ resources have you used from HAEi? What has HAEi helped you to achieve?

We use HAEi Connect as our member database.

HAEi president Anthony Castaldo, has attended all of our major conferences, where he has spoken about the HAEi community. HAEi’s Henrik Balle Boysen participates in every event, because he is the head of the HAE Scandinavia board, which makes it possible for him to bring international news to our members.

Your Next Step… What do you want to achieve for people with HAE in your country by 2030?

We want to ensure that all the approved HAE medications will still be available to all the patients. There is the potential for a change in the reimbursement policy in Norway, which might result in only a few options being funded by the Norwegian health care system.