“Stronger than HAE through sports” is the central theme of our activities this year. The motto highlights the importance of exercise and sports for the long-term health of children and young people with the rare condition known as HAE. Regular physical activity has a positive impact on both physical and mental well-being, and most nowadays HAE patients — with the necessary precaution — can participate in sports.

In 2026, we will address this topic at our Educational family camp, and it is also present in the new story of the Rare Boy, recently published in Czech.

A Rare Boy at the Race – a new story of determination and courage

We are delighted to present the Czech translation of another story by the Macedonian author Natasha Angjelska about the Rare Boy, which features beautiful full-colour illustrations. This time, the young hero is participating in a running race in Ohrid, where he faces a sudden HAE swelling. However, it won’t stop his desire for adventure and victory. Once again, his companions are his loving parents with a faithful friend — the talking balloon familiar from the previous story.

Feel welcome to download the book “The Rare Boy at the Race” in Czech from our Info Centre, in the HAEi section.

The #active4HAE challenge is in full swing!

The global #active4HAE campaign, which launched on April 1 and will run until the end of May, is also strongly linked to sports and leisure activities. We warmly invite you to join  in raising HAE awareness!

Participating is easy — people log time spent on their favourite sports or leisure activities, such as hiking, walking, reading, or knitting. Simply log your results on the official haeday.org portal, where you can create a profile. We would love to see photos of your activity on social media with the hashtag #active4HAE and, ideally, add a touch of purple – the official colour of HAE Day (May 16).

Every movement counts and helps raise awareness of hereditary angioedema in the Czech Republic and around the world! You can find detailed information in this article.

See you soon at the Family Educational Camp!

The traditional HAE Junior Family Educational Camp (May 1–3) is approaching and we are fine-tuning the final details of the program. The theme will be physical exercise and its positive impact on the health of (not only) pediatric patients. In addition to the popular HAEro Games — a sports competition with several fun disciplines — we are preparing other sports and educational activities, as well as inspiring lectures by Czech and international experts or interactive workshops. These three days spent together also provide our patient community with a rare opportunity to share experiences among families and young participants and to strengthen community bonds.

Read more about this year’s and last year’s educational camps.

What’s next?

We have more news and surprises  for the following months — so stay tuned to HAE Junior’s profiles on Facebook, Instagram, and LinkedIn so you don’t miss a thing! Thank you for helping us spread awareness about HAE, by exercising or sharing our posts.