This input is dated May 2021
In brief
- Name for organization: Association of Patients with HAE Slovenia
- Members at 1 Jan 2021: We are in our infancy
- Name of approved HAE treatments:
- Danazol
- Ruconest
- Berinert
- Firazyr
Fun/interesting facts
- The geographical and climatic diversity of Slovenia allows you to pick autumn fruits one day in the morning, swim in the Adriatic Sea in the afternoon, go skiing at night and then take a bath and relax in the spa. All this without magic and with the usual means of transportation.
- It is commonly said that every true Slovene must climb -at least once- the highest mountain in Slovenia, Triglav. Triglav is 2864m high and is located in the Julian Alps. Triglav is our symbol and pride, which we carry in our hearts and coat of arms of our flag.
- Slovenians are full of love. Slovenia is the only country that hides the word “love” in its name. In addition, our capital Ljubljana, which originated as a version of the word beloved, is also a sign of love.
What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes that have happened to patients with HAE have been that we have met doctors who knew a little more about HAE and were, and still are, very sympathetic to us. With their help, we met for the first time, got to know each other, the doctors prepared excellent lectures for us and answered all our questions. With their help, we have been able to access Firazyr, which every patient should now have with them. During this time, we also received diaries where we can write down all our episodes of swelling.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest achievement for people with HAE in Slovenia is that patients can always have the emergency medicine Firazyr on hand, and can self-administer the medication. This makes life a lot easier and there are fewer days spent in hospital.
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?
I am most proud that people with HAE in Slovenia have already managed to see and get to know each other through the initiative of Golnik Hospital. It is much easier for each of us because we know that we are not alone and we know who we can always turn to for help. During this period, I connected with the Society for Rare Diseases of Slovenia, and I was present at the conference for Rare Disease Day. At this event, information on HAE was also presented by doctors and me as a patient, as well as in articles written in the Rare Disease Day brochures and published after the day itself.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
HAEi has helped me a lot over the years; with their help we edited the HAE Slovenia website, and they also helped us set up the HAEi Connect database platform.
Last year I was due to attend the international HAE Conference for the first time, and unfortunately the conference didn’t happen in person.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
For people with HAE in Slovenia, I want to achieve the official registration of the HAE Slovenia association. Through the association, we will find it easier to ensure that emergency medicine is always available at emergency centers if the patient needs it. Awareness and timely diagnosis of potential HAE patients is also needed to prevent the worst. If we are able to save one life, all the effort is rewarded.
