Association of Citizens Suffering from pulmonary hypertension, "Breath" - in Bosnia and Herzegovina
Pulmonary hypertension (PH) is rare, severe and has no cure. In Bosnia and Herzegovina, where our association is based, public awareness of pulmonary hypertension (PH) is also very low.
In our country, it takes a long time for individuals to get a PH diagnosis and many patients die because they do not have adequate medical care. There are no basic therapies provided by the state, medicines are extremely expensive and there are no PH medical centres or patient register.
Our association, Udruženje građana oboljelih od plućne hipertenzije "Dah" - u Bosni i Hercegovini (Association of Citizens Suffering from pulmonary hypertension, "Breath" - in Bosnia and Herzegovina), which formed in 2014, knows how important it is to connect with the media to bring attention to this very challenging condition.
One of our main goals is to raise awareness about this disease and building a relationship with the media is one of the most important tools we have. Our association focuses most of its activities on the media (both electronic and print) to show how this disease impacts on the lives of those affected.
How did we start?
Our first step was to send written information about our organization to all media houses and websites. We included basic information about our association and a description of the position of patients with PH in Bosnia and Herzegovina.
Since then we have undertaken a lot of work in the media with our interviews and pieces published in both print newsletters and on websites (see photo of media clippings).
You can see me being interviewed here (photo top right) on World Rare Disease Day and this appeared on national television and on many websites in our country including in our country’s bestselling newspaper. Lots of journalists now want to hear more about the difficult challenges that patients with PH in our country face.
Our co-operation with the media is now at a high level, although there is still room for improvement. Thanks to the media, PH is getting better known in Bosnia and Herzegovina, much more now than before our association existed.
We are immensely thankful to those in the media who now recognise the problems that people with PH face and openly talk and write about it. It means that through our joint action our organization is better known, patients are searching us out to make contact and the membership of our association has increased thanks to our media presence.
Udruženje građana oboljelih od plućne hipertenzije "Dah" - u Bosni i Hercegovini
(Association of Citizens Suffering from pulmonary hypertension, "Breath" - in Bosnia and Herzegovina)