What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes that have occurred in people with HAE in Bosnia and Herzegovina (B&H) are:
- Dr. Mensuda H. has found a donor to cover the cost of testing analysis in Slovenia, for potential HAE sufferers.
- The doctor is in negotiations regarding a possible and temporary route to access therapy, until we are able to register the association and send an official request for therapy for patients with HAE to the relevant institutions in B&H.
- A Facebook page has been created where useful information about the disease can be found, as well as facilitating communication among patients and an exchange of experiences.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The greatest achievement for people with HAE in Bosnia and Herzegovina is the beginning of testing for HAE and creating a database. We are in the process of drafting the statute and collecting the documentation we need to register the association. Progress is slower due to modest financial resources.
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?
Unfortunately, we have not been able to realize anything yet. In agreement with Dr. Mensud, I plan to do a report for Federal Television for International Rare Disease Day and so raise awareness amongst the wider community as to what HAE is and what the symptoms, treatment and therapy are. After that, I hope that more people who have the same or similar symptoms will come forward.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
In our work so far, we mostly rely on the help of Natasa Angjeleska, the Regional Patient Advocate (RPA) for South Eastern Europe (SEE). She provides us with unreserved support and advice from her personal experience. She is always available and makes time, and understands the situation, and I’m immensely grateful for this. We also have great support from Mr. Mihaela Šogorić (HAE Croatia) who helps us with access to therapy for our members. We also received a large number of presentations and useful information at the regional workshop.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
Our next step is to continue the activities to establish and register the association, to continue testing for HAE and to go out and raise awareness in the media.
Our vision is to provide free therapy for all HAE patients in B&H in the shortest possible time. By receiving free therapy, we would restore dignity to our patients and improve their quality of life. Free testing for potential HAE patients in Bosnia and Herzegovina. Continue to raise awareness amongst everyone as to what HAE is, what the symptoms are, what therapy is appropriate and how to manage a patient with HAE. We want to place a special focus on primary health care, ie. to help general practitioners to be able to promptly identify and refer the patient to the right specialist to confirm the diagnosis and for them to receive therapy. The biggest challenge to deliver on our planned activities, is only modest financial resources.