This year, the campaign "Getting to Know Rare Diseases" continues to inform the public about news related to these patients in the country. The number of rare disease diagnoses in Macedonia exceeded 300, and the number of patients with rare diseases reached 957.

One of them is young David, son of Gordana Loleska, president of the association "It's Rare to Be Rare." The heroine who has been raising awareness about rare diseases in our country for ten years.

The illness did not prevent my son from graduating, Loleska tells Free Press, he is now a graduate criminologist, telling about how they went through a golgotha ​​over the years, first, to find out what the diagnosis was, and then in finding a cure, but it mostly affected their psyche and of course their family budget as a single mother of three children.

– Yes, unfortunately in the beginning, 10 years ago when we learned of my son's diagnosis, I couldn't even find anyone with Alport syndrome in the Balkans, but today, with the help of Professor Tasić and Doctor Nikola Georgievski, we have reached the number of 80 patients in Macedonia alone – says Loleska.

A few months ago, David ended up on dialysis.

– A few months ago, his condition worsened. His kidneys failed, which is a consequence of the rare disease, and my son has been on dialysis for two months now. The medications that David was taking before were extremely expensive, they were not covered by the Health Fund, so his condition before he ended up on dialysis cost around 10.000 denars per month. Considering that I work at the post office and earn a minimum wage of 22.500 denars, you can imagine how everything went. We will somehow manage with our finances, but the knowledge that there is no cure for your child, that until a compatible donor is found, he will be tied to a machine for five hours at a time, is really very, very, very difficult – says Loleska.

When Loleska started her fight 10 years ago, In all her suffering, with the help of psychological support and medical advice, she rose above the problem by founding the rare disease association "It's Rare to Be Rare" and launching the campaign "Getting to Know Rare Diseases" in order to bring it closer to the wider public. Appearing regularly in the media, talking about her own son's illness, he, as a teenager, did not want his mother to speak publicly about him, but things have changed.

– David was only 13 years old. At that time, I was going through a very bad mental state. However, thanks to Professor Tasic and Professor Kuzmanovska from the Children's Clinic, whom I publicly thank for their help and support, their advice that my son needs me now, not to give up, to join an association, helped me get back on my feet. Back then, when I started organizing events, I received a warning from David: "Mom, don't talk about my rare disease, don't say that I have a rare disease." Years later, he was encouraged to realize that there are many, many children, many people who live with rare diseases, that it's not the end of the world. Even today, he is a great support in organizing events, he even took a picture with a painted hand for the first time - she says.