From Natasha Jovanovska Popovska, President, HAE North Macedonia

hae day :-) Marked in North Macedonia with a Children’s Book Promotion
HAE Macedonia marked hae day :-) by a promotion of the children’s book about hereditary angioedema on May 17.

The book “Rare Boy at a Race: I Swell, But you Cannot Tell – I Run like Hell!” by the author Natasha Angjeleska is the third sequel of the Rare Boy and the Talkative Little Balloon series and has been translated into 8 languages. It is based on a true story about a young boy, Ognen, who suffered a stomach attack but managed to run a marathon after receiving the treatment and was proclaimed the hero of the day by the media.

The promotion highlighted the importance of having accessibility to treatment for patients with HAE, as in some patients, the quality of life significantly improves over a short period of time. Ognen Jankovski (16) – the inspiration of the book – addressed the audience and said that despite the obstacles we face in our daily lives, we should always move forward without stopping.

After the promotion, attendees walked through the city center in order to join the HAEi’s initiative of #active4hae to raise awareness of this rare disease.