This input is dated May 2021

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In brief

  • Name for organization: HAE Vereinigung e.V.
  • 300 members at 1 Jan 2021
  • Name of approved HAE treatments:
    • Berinert 500, 1500, 2000, 3000
    • Cinryze
    • Firazyr
    • Ruconest
    • Takhyro

Fun/interesting facts

  • We have the so-called 5th season, the so-called ‘Carnival’ or ‘Fastelovend’. In some regions of Germany, also called ‘Fasenacht’.
  • At Christmas time, the Christmas markets are very well known beyond Germany’s borders.
  • Oktoberfest in Munich, which has been taking place in the last week of September and first week of October every year since 1900. Last year was an exception as it was cancelled due to Coronavirus.

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

  • Contributed to study designs.
  • Participated in studies.
  • New centers found.
  • Small regional meeting.

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

  • Contributed to study designs.
  • Participated in studies.
  • New centers found.
  • Small regional meeting.

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?

  • 2013 the first national HAE Youngsters meeting in Germany. We brought children and young people together to exchange ideas. Doctors answered their questions and we taught young people how to inject themselves.
  • 2014 the second national youngsters meeting was held, and siblings were also invited. We are of the opinion that they also need an open ear in order to be heard.
  • 2016 – 1st International Youngster Meeting in Madrid. Many international friendships have developed. We taught the youngsters that they don’t have to sit out the swelling – there are other ways too. You just have to fight together.

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

We in Germany are a country that has not learned much from HAEi – rather the other way around. We think that needs to be said. We were the first in many things.

  • 2007 – 1st international congress in Frankfurt.
  • Youngster meeting – knowledge exchange between young people.
  • 2014 Presentation by our young people in Washington.
  • In 2016 we led the first international youngsters’ meeting.

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

  • That we make HAE even better known.
  • That each affected person receives a therapy that is suitable for her/himself.
  • Anyone can use it at home.
  • That nobody has to die from HAE anymore.
  • That all HAE patients have been found – that there are no more unreported cases.