What positive changes have happened for people with HAE, in your country, from 2012 to now?
We look forward to prophylactic treatment methods – where the primary focus in the development of medicine is on the prevention of attacks.
In 2014, Norway and Sweden joined HAE Denmark, and the association turned into HAE Scandinavia, and as a result we became larger and ultimately stand stronger together.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
Self-administration has become significantly more widespread among HAE patients in Denmark. At the same time, several patients are receiving prophylactic treatment in Denmark.
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?
In 2012, Denmark hosted HAEi’s first global conference in Copenhagen with 350 participants.
In 2011, the HAE Denmark association turned 10 years old.
In 2015, 2017 and 2019, we are proud we were able to gather patients, care givers/relatives, physicians and the industry for our Scandinavian conference – these were held in Denmark, Sweden and Norway respectively.
This year, HAE Scandinavia can celebrate its 20th anniversary. We are planning another Scandinavian conference to mark this milestone in November 2021.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
All the tools (websites, HAEi Connect, emergency cards), conferences, youngster activities, knowledge about HAE and a fantastic network of patients, care givers/relatives, physicians and the industry in many countries. This makes all of us wiser about the disease – and not least about ourselves and each other.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
Continued access to the wide range of HAE medicines on the market and that new HAE medicines will also be available to HAE patients.
That all patients are offered prophylactic treatment, so that no-one has to wait for the “catastrophe”, but can focus on living a life without fear of HAE attacks.
We get ACARE implemented in Denmark, to have a strong/ some strong treatment centers for HAE patients in Denmark.
That we may soon meet again after this terrible Coronavirus pandemic.