What positive changes have happened for people with HAE, in your country, from 2012 to now?

We founded the association in 2016. From then, to today, we have been able to find almost 30 new patients. We have provided therapy for all patients, including prophylactic medicine. We have trained those patients who wanted to learn how to self-administer. We have appeared in the media over 200 times, spreading awareness about HAE. Twice we lit all the important buildings in Serbia in purple.  We educated doctors at several round tables on HAE. We had a screening of the film “Special Blood”. We conducted the campaign “Doctors in Purple” and  we walk and hike for HAE every year.

What is the biggest achievement for people with HAE, in your country, from 2012 to now?

Definitely that we are providing therapy for all patients.

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 the fact we have appeared in the Serbian and regional media over 200 times, for various occasions related to HAE. It meant a lot to uu, to be able to raise awareness and advocate about HAE in this way.

What support/ resources have you used from HAEi? What has HAEi helped you to achieve?

Website hosting, asking our RPA for help, a Regional Workshop, going to the HAE Global Conference.

Your Next Step… What do you want to achieve for people with HAE in your country by 2030?

We want to raise the awareness of HAE so that most doctors are able to recognise it. We would also like to find as many undiagnosed patients as possible and provide prophylactic therapy for all those interested. Another mission is to decentralize therapy.

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