What positive changes have happened for people with HAE, in your country, from 2012 to now?
HAE-Austria was founded in 2006, and at that time no HAE patient knew another. It was very slow in the beginning, nobody wanted to come out as having HAE, everyone wanted to remain anonymous. This is still a problem today, and those affected fear losing their jobs. But, it is much better than it used to be. Many are open about having HAE and receive a ‘degree of disability’ status that gives them tax benefits. Doctors take care of the disease and treat us well. In the past the only treatment available was danazol, today we get almost all drugs that are on the market for HAE.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
People have networked with one another and help each other within the group, e.g. with the health insurance companies that pay for and approve our medication. We do not need to be ashamed of HAE or to hide. We are doing well as a community and stronger together.
All information about new medicines or Coronavirus is immediately shared so everyone who wants to be, is informed.
We can and are allowed to inject our own medication and receive further help from organizations such as Healthcare at Home.
HAEi has helped us a lot in getting to know people all over the world, as well as bringing therapies everywhere and allowing us to network further.
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?
Our greatest success was our 10 year meeting in 2016, which we organized with a medical moderator and which was attended by more than 70 people.
Our HAE experts are always there for us, very easy to reach and answer our questions immediately.
Whole families, including those with small children, always take part in the annual meetings and are always welcome. They ask their questions, play and romp around as well.
Of course, there is no event for the hae day :-) in 2021!!!
But we have organized hikes on hae day :-).
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
HAEi is a constant source of ideas for us, at the big meetings I/we learned a lot and copied some ideas for our smaller meetings in Austria.
We have already been able to introduce our country to the community and sometimes write articles in the newsletter.
Furthermore, getting to know each other or having a personal conversation with the HAE experts is very important and contributes to us having the latest information. Being able to share with the other HAE groups is also very helpful.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
In Austria, 100 to 120 people with HAE have been diagnosed and recorded. It would be important to reach those patients who do not already know they have HAE. For this, the awareness of the clinical picture would have to increase among doctors. After the corona crisis, we are again trying to become more present in the media, in medical journals, etc. in order to draw attention to HAE.
Everyone with HAE should / must get the best medication for them.