In brief

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

Fun or interesting things about Sweden

Sweden is one of the world’s most sea-rich countries and almost a tenth of Sweden’s surface consists of lakes.

Fermented fish, herring is a Swedish specialty that is eaten in August. Another Swedish specialty that is happily eaten by Swedes in August is the cooked crayfish.

Music is one of Sweden’s largest exports. You may have heard of Abba, Roxette, Robyn, Avicii or Swedish House Mafia?

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

So many positive things have happened for patients with HAE in Sweden since 2012. To name a few, we HAE patients have received a number of new medications which make everyday life easier and contribute to an increased quality of life for HAE patients.

Knowledge about HAE has increased among both doctors and other healthcare professionals, which has contributed to a greater interest in the situation of HAE patients and an increased willingness to find an effective and individually tailored treatment for each patient. This in turn has contributed to most HAE patients in Sweden having an effective treatment.

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

The biggest achievement for patients with HAE in Sweden from 2012 to now is also linked to medicines as we have gained access to modern medicines with fewer side effects, which is fantastic when you look back to how it was. We patients have also become really good at self-administration and we have been willing to try new treatment methods.

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 events that we are most proud to have organized for HAE patients in Sweden are our very engaging and appreciated HAE meetings. These are a great source of exchange of experience between patients and their loved ones, and a way to meet other people with different connections to HAE. We try to hold these meetings in different places in our large country so that as many as possible have the opportunity to come.

Another thing we are proud of is that along with Denmark and Norway, we have created a strong single patient association with good contact and discussions with doctors and other healthcare professionals in the various countries

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

We have received very good help from HAEi. Among other things, HAEi has helped us to develop an easily visited website, which means that if an HAE patient or relative searches for information about HAE, the website is easily found and can then provide good information quickly to those who request it. Another service we are utilizing is HAEi Connect, which has made it possible for us to get in touch with our members in a fast and efficient way.

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

What we want to achieve for patients with HAE in Sweden by 2030, is that everyone should be given the opportunity to have access to new and preventative treatments. We believe that an effective preventative treatment would make life easier and increase quality of life for HAE patients in Sweden. We also want to be able to hold many meetings, allowing us to exchange experiences and learn from each other. We also want to increase awareness of HAE Scandinavia so that everyone who receives a HAE diagnosis or has a relative who has been diagnosed with HAE should be given the opportunity to join a strong and supportive patient organization!

“Stockholm from City Hall” by akasped is licensed with CC BY 2.0. To view a copy of this license, visit

“Abba” by Peter Forret is licensed with CC BY-NC 2.0. To view a copy of this license, visit

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