What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes that have happened for people with HAE in Bulgaria include the availability of treatments Berinert, Ruconest and Firazyr, and all of them approved for home administration.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest achievement for people with HAE, in Bulgaria, from 2012 to now is the availability of treatments Berinert, Ruconest and Firazyr, and all of them approved for home administration
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?
We are most proud of our success in changing the legislation for the benefit of patients. We have achieved this twice in the last 3 years and this gives us confidence that we will succeed again. We are very proud of the launch of large-scale media campaigns in our national print and electronic media over the last 3 years, especially the special documentary “FORTUNA FAVET FORTIBUS” about HAE produced by our organisation, which resulted in providing faster and better access to a timely diagnosis and treatment for patients with HAE.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We have used almost every resource that HAEi can give us – Regional Workshops, Global Conference, the latest information from the industry provided by HAEi, patient advocacy good practices and more.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
The next important goal our Association wants to achieve is to improve the access of HAE patients to therapies and in particular to HAE prophylaxis. Our goal is to collaborate more closely with Patients Community, Bulgarian Authorities and healthcare professionals in order to improve the access to treatments with C1 Esterase Inhibitor (Human) and especially in terms of prophylaxis with the subcutaneous form or any other new oral therapy. We deeply believe that access to these new therapies in Bulgaria will significantly improve patient compliance and will lead to positive lifestyle changes.