What positive changes have happened for people with HAE, in your country, from 2012 to now?
Our organization is very young. It was founded on February 29, 2020. So far we have been able to complete a few activities to raise awareness of HAE. We have created educational and promotional material that we are currently distributing to hospitals and health care institutions. 6 & 7 March 2021, we have our first reporting assembly which includes a lecture by physicians managing HAE. We are working on a register of patients in the Republic of Croatia and so far we have 69 people diagnosed with the disease, of which 17 are children.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
We are most proud of the fact that we finally managed to start an organization. We have also been guests on various TV stations, and in the daily and weekly press.
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?
One of the major successes was on 16 May 2020 when we managed to light in purple the Osijek pedestrian bridge over the Drava river. It is also a success that the doctors recognized the work of our association and became more involved and engaged to help and support us.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We participated in a regional workshop, HAEi created a website for us and we also use the app.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
- That we will all have medicine available at home.
- To secure disabled person, and benefited length of service, status.
- Faster diagnosis.